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Ow! Muscle cramps keeping me up at night, and leading to permanent injury

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by NilaJones, Jan 22, 2014.

  1. NilaJones

    NilaJones Senior Member

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    Hi folks :). Can give me some ideas on tweaking my supplements?

    I was up most of last night with muscle cramps, and the intensive stretching I did for a few months to prevent cramping has permanently damaged my sacroiliac joint. So, no more of that.

    I have been searching and reading old threads for what might help, but so far have not found any ideas.

    I am currently taking, daily:

    2mcg B12 (Yes, only that, for the past 9 months or so. I am eager to increase this as soon as I can get the cramping under control. Each time I try, cramps get worse.)

    1.5mg folate (half folapro, half folinic -- really I take 7mg once every 5 days)

    Potassium: In addition to a fruit and veg-heavy diet, I get 3000mg in supplemental foods, daily -- carrot or coconut juice, dried fruits, and potatoes. I do feel it if I eat less.

    iron 76-94mg (I have IDA)
    calcium (was 1000mg, have decreased to 333 this week but that may be making cramps worse)
    magnesium 600mg oral + about 1000 topical
    selenium 100mcg
    vit K 50mcg
    vit D 10,000-15,000iu, plus about the same from uv light. ( I am deficient.)
    vit C 0-3,000mg
    vit A, gamma-heavy blend, 400mg
    copper 0.66mg (I would like to take more -- any tips on avoiding vomiting?)
    sunflower lecithin 3,800mg
    fish oil and evening primrose oil.

    I was taking a lot of zinc until 3 months ago, when I realised it was way too much so I stopped it and added in the calcium. Is it time to add it back again?

    I have very limited access to testing. There is not a lab in my area, and it usually takes several months to arrange a test, though sometimes I get lucky and it's only a couple weeks. The lab does not send out tests, so they can't do the very unusual ones -- just in house stuff. So I have to choose my supps based on other people's experience and trial and error.

    Should I try some other B vitamins? What works for you, and in what dosages?

    Is there a write-up somewhere about the different 'add later' methylation supps? I keep seeing these references to starting with the things I am taking, and adding in more things later. Have I reached that stage?

    I am currently doing a yearlong program of food allergy testing, so supps that are corn-derived like D ribose might need to wait a couple of months. I can speed that up, though, if someone thinks one of them might be the source of my problem. Sleep and injury prevention are paramount!

    Thank you so much for your help! Even this tiny amount of B12 has done wonders for me, and I sure would like to be able to increase it.
  2. snowathlete

    snowathlete

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    There may be some gum arabic derived D-ribose out there. I haven't looked but I am hoping there is if I respond well to D-Ribose (I am trying at the moment but expect the stuff I have is corn based and I am intollerant to maize).

    Do you have any idea what could be causing your cramps in the first place? I wouldn't assume it is normal. There are several genetic mutations that can result in them.
  3. NilaJones

    NilaJones Senior Member

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    Oh, cool! So, you think it might help? I am not real clear on what it is for :).

    Can you elaborate on the gentetics?

    I thought muscle cramping was a pretty common side effect of methylation supps. Is that wrong?

    I do have a possibly-related problem of muscle tightness (not cramps, but painful) all over, which predates the methylation supps. It runs in my family. so I am very interested to know what genes you are referring to. I have 23andme results to compare them with.
  4. caledonia

    caledonia

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    Hi Nila, I think what is happening is the dreaded "potassium deficiency on methylation startup". I've been struggling with this for many months and I think I finally have it resolved.

    What works for me and many others is to add NOW potassium gluconate powder to whatever you're doing. As your body starts to heal, it will require a lot of potassium for cell rebuilding. Since ME/CFS patients are typically already low in intracellular potassium, it's impossible to get the potassium you need from food and into the cells. That's what my doc wanted me to do - I gave it a good try and it just isn't possible. I'm doing so much better with the supplement.

    Potassium and magnesium work together on relaxing the muscles, and deficiencies of either have similar side effects.

    If you tried it, you should know pretty quickly if potassium is going to work for you.

    If you wanted to do testing, the best test seems to be a hair metal test to see what's going on with intracellular potassium. You can get this online and use the doctor provided by the online testing place to rubber stamp it for you. I think this Doctor's Data one is what Yasko uses:
    http://www.integrativepsychiatry.net/hair_elements_hair_analysis_test.html

    A blood test for potassium will only give you a "snapshot" of what you ate recently, not what is going on inside the cells, so they can be quite different. For example, my potassium was on the high end of normal on my Nutreval test (blood test), but I got potassium deficiency symptoms very soon after startup.
    =-==-=-=-=
    As far as the folate and B12, for most people, the amount of folate you're taking is too high relative to the B12. You should be taking somewhat more B12 than folate, otherwise it can either cause methyl trapping (stopping methylation) or depletion of B12.

    Unless, you're one of the people who don't get a response until they crank up the folate amount. Since you seem to be getting potassium deficiency (indicating methylation is working), maybe this is your situation.

    What is the reason for not being able to increase B12?
    Star-Anise likes this.
  5. NilaJones

    NilaJones Senior Member

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    Hi caledonia :).

    Glad to hear!

    Ok, I can do that. I have potassium gluc tablets, but I stopped taking them when I realised how small 99mg is compared to what's in foods. But, yes, I can dissolve them in water. I can also up my coco and carrot juice intake.

    I did raise my potassium intake about 1,000 mg when the cramps started, but that didn't help much. How much is enough? Is there an unsafe level? My gut is ok now, but I have had severe problems with it in the past, so I am a bit paranoid.

    Ah, I did not know. Should I also try to raise my magnesium? Any tips on how to keep the mg citrate from giving me diarrhea? That's why I was taking the calcium. But is calcium not good for us?

    Thanks for the link! Looks like a good deal and I think I will do it :).
    Ok. I can stop taking those tiny amounts and just rely on food, maybe? I eat 5 servings or so of green veg per day, because I feel much better if I do.

    Hmm. For a while (6 months?) I was taking folate only, about 800mg, due to a brain foggy misunderstanding of the protocol, and it helped me a lot. But I stopped when warmed about methyl trapping.

    Each time I try, the muscle cramps get worse. And so far, potassium doesn;t help.
    Last edited: Jan 22, 2014
  6. veronica_corningstone

    veronica_corningstone

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    Are you taking B1, B2, B3? As Freddd has pointed out, that can overdrive the need for potassium as well. How's your cortisol level? High cortisol causes a retention of sodium and an excretion of potassium.
    Star-Anise likes this.
  7. NilaJones

    NilaJones Senior Member

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    No, I am not taking any of those. I don't know my cortisol level.

    I did notice that my desire for salt in foods went up quite a lot when I started the b12, and now varies. It's low the past couple of days, but last night I ate salty food anyway because it was all I had.
  8. NilaJones

    NilaJones Senior Member

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    Well, I thought I would try upping my potassium even more, so I just had a meal of 1800mg (1700 as juice and fruit, and 100 as a tablet). Boy am I nauseous.

    I found the thread on potassium, and folks there say to avoid stomach upset by putting it in a foot bath But I cannot sit or lie in a position for footbaths.

    I am feeling all boxed in. Also weepy due to sleep deprivation.
  9. snowathlete

    snowathlete

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    When I did methylation a few years ago I got pottasium problems, and it is definitely worth supplementing quite a bit with it. I only really got that problem on quite high doses of folate but if your symptoms might be caused by that then well worth taking some potassium but just read that isn't helping. If it started with the B12 then it's probably related but I don't know enough to suggest what else to try. Someone else here will.

    The tightness sounds like it might be something else. Check for mutations In your SPAST gene on 23andme, particularly the SNPs that 23amdme have labelled with an i number - I have tightness and some other symptoms which may be caused by a mutation on that gene which is known to cause a particular disease - but it's fairly rare. I only discovered this last week. It runs in families.

    There are some other mutations that can cause metabolic conditions which can result in cramps and tightness and so on. There is a thread started by Valentijn with a tool her and her partner created which helps you identify rare mutations you have, which is worth running.
    It found I have a mutation in another gene which could cause a loss of AMP which is important for energy production and can also cause muscle pain, and D-Ribose may help as it leads to more AMP. Probably only worth trying if you have a mutation unless you're curious to just try it.
    Last edited: Jan 22, 2014
  10. NilaJones

    NilaJones Senior Member

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    Thank you, snowathelete! It would be amazing to find a name/cause for this muscle thing. I have been hoping it would be cured by methylation...

    I don't have a computer that has enough RAM to open the text file from 23andme, even in a simple editor like wordpad or jarte. I was able to run the genomic genie because it runs on the closed file. But the rare alleles software requires opening, cutting, and pasting.

    Do you, or anyone here, know how I can search the file for this gene without being able to open it and run the 'find' function?

    As for the potassium, I feel kind of stupid that i didn't realise it could be the problem -- before I posted I did try increasing my potassium intake by 1,000mg.
    In the past that has always done the trick, and when it didn't work this time I just assumed my problem was something new.

    The combo of not being able to think clearly and trying to troubleshoot this stuff is so frustrating. I am grateful for community! Thank you so much, everyone who has helped, here and in email :).

    snowathlete likes this.
  11. Freddd

    Freddd Senior Member

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    Hi Nila.Jones

    1.5mg folate (half folapro, half folinic -- really I take 7mg once every 5 days)

    I suspect that any of several reasons that this is the heart of the problem. Can you describe the neuropathic symptoms you have in your legs?

    What happens if you take it every day? The halflife of both forms is a matter of hours with the folinic having a few more hours.

    Have you tried ONLY Metafolin? What happens?

    A suitable b-complex or separates could be very helpful. Some of the b-complex controls how the folate or if the folate is used so there is "enough" versus "not enough" or "too much".

    Is there a write-up somewhere about the different 'add later' methylation supps?

    There are others but with so many basics missing, that might very well be the best place to start. I like the 8 factor NOW foods High Gamma E. There are other similar products and have no idea which one or ones might be best. I'm taking the NOW foods one because it is one of the better balanced ones, not too much d-Alpha and plenty of Gamma, in my opinion for the future. I know of no good evidence. Vit E is a subtle one.

    Are you taking the potassium because you have titrated by effectiveness or via theory or ...?

    edited to add"
    Also, you likely need a great deal more of both forms of active b12. This is very possible a neurological problems
    Last edited: Jan 22, 2014
    Star-Anise likes this.
  12. snowathlete

    snowathlete

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    Shouldn't require opening the file I don't think. Once the program is downloaded just run then tell it where the file is and it will do everything itself.
  13. caledonia

    caledonia

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    Here's another idea. Maybe the high amount of folate/folinic is causing methyl trapping and that's making existing muscle cramping tendencies worse. I think this is along the lines of what Freddd is thinking. In this scenario, you would trial stopping folate/folinic for awhile and see if things improve. "Awhile" could be up to several weeks to get back to a baseline.

    Then you might want to see if you could raise the B12 levels without the presence of folate/folinic.

    Then when you restarted folate, you would keep it below the B12 amount. You could trial it with and without folinic to see if folinic is a problem.

    Be sure to start a symptom journal and take notes while you're experimenting. It's too easy to forget details over time if you don't write it down. I just use the calendar template in Microsoft Word.

    Exactly what kind of B12 are you taking, and how do you get it down to 2mcg?
    Star-Anise likes this.
  14. Freddd

    Freddd Senior Member

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    Hi Caladonia,

    Methylfolate doesn't cause methyltrap. It is what is being blocked or trapped Lack of MeCbl causes methyltrap. Glutathione/NAC can cause methyltrap. Folic acid and folinic acid appear to cause partial methylation block as opposed to methyltrap unless it is effective and then a shortage of MeCbl causes methyltrap or partial methylation block. That is a problem with folic and folinic acid is that one never knows what the result means, it can mean that it is working or not working, depending upon the person's own response and their MeCbl content. Keeping methylfolate "below" MeCbl amounts will cause endless donut hole paradoxical folate deficiency. There is almost no relationship between amount of MeCbl and amount of Methylfolate that might be needed. Taking more folic and/or folinic acid above the person's conversion amount can cause partial methylation block.
    Star-Anise likes this.
  15. Critterina

    Critterina Senior Member

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    Nila,

    Have you ever used GABA? I remember we are much alike in our mutations, and GABA has got me to a place where I can get my shoulders to relax. After 54 years, who knew they weren't supposed to be like iron? Calves too.

    I take one or two 500 mg capsules per day. I open the capsule and dump it under my tongue, per my healthcare practitioner. And she said 4 pm-7 pm. But if I take two, I often do one in the morning. Once you've tried these other suggestions, it might be worth a try. One thing I noticed was that I started dreaming vividly after starting GABA; I hadn't dreamt in over a year.

    Edit - news flash! Having just read and posted, did a test. I have never, since childhood, been able to point my toes without the arch of my foot cramping. I just did. Hmmm. Wow!
  16. caledonia

    caledonia

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    Hi Freddd, I think we're on the same page here, but using different terms. I somewhat disagree on the amount of methylfolate needed. The bottom line is we're all different and what works for you and me will not work for everyone, but there is a predictable framework we all fit into.

    For most people, methylfolate absorbs well, and small amounts will work well, improving symptoms. (This is my experience, but doesn't seem to be yours.)

    For some lesser amount of people, methylfolate doesn't absorb well, and they have to take a huge amount to get a positive response. (This seems to be your situation.)

    For the people who absorb methylfolate well, taking more methylfolate than B12 will cause methyl trapping, i.e. stopping methylation and/or depleting B12. I've had this happen to me.

    For people who don't absorb methylfolate well, they need to take much more methylfolate than B12, and it won't cause methyl trapping (unless hypothetically they took a super huge amount). (This seems to be you.)

    For everyone with MTHFR mutations, folic acid will not convert well causing unmetabolized folic acid and also blocking methylfolate.

    Some lesser amount of people can have similar problems with folinic acid and/or vegetables. (This seems to be you, but not me.)

    Some people (both you and me) have problems with not being able to convert hydroxycobalamin. Again, this appears to be a less common situation.

    Everyone should be able to utilize methylfolate, methylcobalamin and adenosylcobalamin.

    Everyone has some different combination going on, but it's some combination of what I mentioned above.

    You can't tell from SNP tests, or even functional testing which one of these situations is going to pertain to you. Therefore, you have to experiment via trial and error, Starting Low and Going Slow, just in case you're one of the quick responders. In that case, you can make yourself much worse by going too high too fast.

    If there was a form of sublingual methylfolate, maybe it would bypass the absorption problems that some people have. The closest thing I've found is Yasko's Methylmate B, but it has some other stuff complexed in, which may or may not be a problem for some people.
  17. Freddd

    Freddd Senior Member

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    Hi Caladonia,


    Some lesser amount of people can have similar problems with folinic acid and/or vegetables. (This seems to be you, but not me.)
    Your lucky. It is a lesser but unknown percentage. A person with a lot of the symptoms that brings people to this page can know only after doing some trials as far as I know. It seems to be the people that had certain problems since birth or early childhood in the days before folic acid.

    For most people, methylfolate absorbs well, and small amounts will work well, improving symptoms. (This is my experience, but doesn't seem to be yours.)

    The absorption works well for most but small doses can start insufficiency symptoms in people with certain symptoms patterns. The healthy majority of people without all these mysterious diseases for the most part appear to have perfectly normal folate response and usage. Those who are sick with the symptoms complexes I posted and looking for answers have problems with folate.

    Everyone should be able to utilize methylfolate, methylcobalamin and adenosylcobalamin.

    I agree fully. And add that additional factors may be needed like carnitine (about 5%), zinc, D, magnesium, SAM-e, D-ribose, biotin, some b1, b2, b3 and a few other things (all of them add up to another 5% or so).

    I'm just going by the definition of "methyltrap" (circa 196x) which as Rich suggested should be named "methylfolate trap" for better clarity and I agree

    . For the people who absorb methylfolate well, taking more methylfolate than B12 will cause methyl trapping, i.e. stopping methylation and/or depleting B12. I've had this happen to me.

    By all the definition (of others, not me) methyltrap is the expulsion of methylfolate from cells for lack of MeCbl in the cell when needed. There is no evidence that methylfolate causes it's own expulsion from cells. I have not met any people except those taking more than 30mg by injection (or oral/sublingual megadose) daily that generally take more MeCbl than methylfolate. For those, taking body levels of MeCbl, typically 1-10mg nominal dose, up to 3mg absorbed, many only absorbing 200mcg, can still need up to 20mg of methylfolate. It never casues methyltrap that I have ever seen. Too small a dose of methylfolate does cause donut hole folate deficiency

    Some people (both you and me) have problems with not being able to convert hydroxycobalamin. Again, this appears to be a less common situation.
    To the best of my knowledge, HyCbl is shown in any study to be better than CyCbl in any really significant way. The biological limits remain the same, about 10-20 mcg can be converted to MeCbl then to AdoCbl at best for anybody. It works at best for a small portion of the symptoms that respond to the symptoms of AdoCbl and/or MeCbl. It is 1/100 to 1/10000 as effective as the active b12. Carmen Wheatley in her Gorilla in the room paper pointed out that HyCbl looks like a starvation workaround that is only partially effective. Nobody having excellent results with HyCbl appears to be entirely the norm. My experience is that the longer a person takes HyCbl the more deficient they become on 80% of symptoms and the stronger the startup with MeCbl and AdoCbl.

    For everyone with MTHFR mutations, folic acid will not convert well causing unmetabolized folic acid and also blocking methylfolate.

    Nobody can convert large doses, above about 800-1000mcg so at say 2000mcg of folic acid a day almost everybody is like to have problems. I'll have to check side effects of some high dose folic acid studies.


    I somewhat disagree on the amount of methylfolate needed.

    Also, I didn't mention any amount of folate and think that a person should take the amount that gives them the best results And you disagreeing with that? I think people need to titrate for effectiveness of methylfolate because the range is huge, from under 800mcg to over 30,000mg. I have no idea how much any needs until they find that level by titrating for effectiveness and at certain points it becomes obvious that something else is interfering.

    So what are you actually trying to say? That you don't like the titration rate I describe for getting rid of paradoxical folate deficiency symptoms? That I say that too low a level of methylfolate can cause unending deficiency symptoms until a person gets to an adequate level?

    That low folate symptoms are often called "detox" ?

    Please be specific. I'll do my best to say what I mean. Right now I have don't really know what you are specifically saying.
    Star-Anise likes this.
  18. NilaJones

    NilaJones Senior Member

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    @Freddd, @caledonia, @snowathlete, @Critterina

    Thank you so much, everyone! When I am feeling too sick to reply I still read and appreciate! I will try to answer all questions, now :).

    I thought I was taking the right amount of folates. Would you believe I did an undergrad degree in math and biochem? But sure, I can stop taking them.

    When I was even more brain foggy about understanding this stuff, I took 800mg folapro daily for, I dunno, 6 months or so without b12 and it was awesome. So yes, i think I absorb it.

    I am getting my 2mcg of B12 (approx) from canned clams. I could not find a low enough dose of the sublinguals. No matter how I diluted I felt like I was on a low dose of hallucinogens. The clams feel like a cup of caffinated tea, to me. I think they are mostly adenosyl?

    I would LOVE to increase my B12, but each time I try the nighttime symptoms are intolerable.

    The symptoms are sharp, slicing pains, 'charleyhorse' style cramps, and restless legs. At different times they have been alleviated by potassium, magnesium, iron, copper, or zinc. Often a given mineral helps with one type of pain more than another. The burning pain in my sacroiliac joints is a new one.

    I welcome other suggestions too, as I am taking about as much as I can handle of all of those. Should I take more calcium, or none, or what?

    Saturday I ate as much potassium as I could manage, just under 5 grams, mostly as food, and slept well with little pain. Last night was pretty bad, though. I went to bed 9:30, found a comfortable position at 12:30, woke up at 2 feeling like someone had sunk a knife in under my shoulder blade and two more in my calves. Spent 5 hours trying to find a comfortable position. Tried an iron capsule (usually takes about 15 minutes to help) with no effect. Did some stretching and massaging, ate a banana and a potassium pill; that worked.

    Oh, yeah, and I inspected the thing in the bed that felt like a knife blade I was resting my calf on. It turned out to be the seam in a pillowcase. This is typical -- any wrinkle in the sheet, etc, gives me a charleyhorse or knifelike pain. I am the princess and the pea.

    I also get sleep paralysis that extends for a long time after waking, if that is relevant. About 30 minutes before I can move my eyeballs a bit, 1 hour before i can twitch my fingers, 3-4 hours before I can get up. This and the pain stuff is new since I started methylation.

    Has anyone tried topical potassium, not in a footbath? Like magnesium 'oil'.
    Last edited: Jan 24, 2014
  19. NilaJones

    NilaJones Senior Member

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    Re: Folate, my problems started after a bout with mono during which I ate zero vegies for about 9 months. Before that, I ate an unusually high amount of veg, all my life (grew up on a farm, then became a vegetarian). Another family member also got ME after 10 years as a vegetarian.

    My whole family loves vegies. This may be explained by our folate-related mutations? I suspect I may be unusually maladapted to a diet without meat, fish, and lots of greens.
  20. Star-Anise

    Star-Anise Senior Member

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    @NilaJones
    Are the cramps only at night? I don't want to introduce another variable, but I wonder if heightened nighttime cortisol is a factor?
    S.

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