Twitching

[dannybex]

Thanks for the v informative post Dannybex.
Regarding calcium and magnesium, they both affect nerves so it makes sense they could influence twitching. Do you always take them in the 1.2 ratio? EG. 1000mg a day of magnesium means you must take 2000mg a day of calcium.
I was a bit erratic about this proportion but reading your post made me suddenly realise my twitching has almost stopped since I started being more careful about the proportion. Of course it could just be pure coincidence, I've no way of knowing.

Sorry for taking so long to reply...I got lost in the Phoenix Rising Jungle!

It's weird -- sometimes I think that cal/mag makes the twitching worse, at least for me. I've read on other boards as well, that others have this problem. It could be the forms of calcium or magnesium they're using. Malate, while recommended by some, is from what I can remember, is stimulating (from malic acid), so that could be a problem.

I've lately been experimenting with calcium plus vitamin d, then taking an extra supp that has cal/mag/boron. Not sure if it's helping or hurting. Sometimes it tends to give me kind of an RLS thing...so confusing.

I do think that a strong possibility in PWC's is that adrenal function can be low, or problematic. And adrenal hormones help control electrolyte balance (sodium, potassium, cal, mag), so it may be due to the inability to balance that sodium/potassium balance, which then screws up the other two.

The sun is finally out today, and the weather slightly warming, so I may just try and sit outside for 15 minutes...see if I can get some 'real' vitamin d.

One thing's for sure (at least in my situation) -- twitching / muscle spasms / cramps are always worse in the winter months...

 

[Hysterical Woman]

Sorry for taking so long to reply...I got lost in the Phoenix Rising Jungle!

It's weird -- sometimes I think that cal/mag makes the twitching worse, at least for me. I've read on other boards as well, that others have this problem. It could be the forms of calcium or magnesium they're using. Malate, while recommended by some, is from what I can remember, is stimulating (from malic acid), so that could be a problem.

I've lately been experimenting with calcium plus vitamin d, then taking an extra supp that has cal/mag/boron. Not sure if it's helping or hurting. Sometimes it tends to give me kind of an RLS thing...so confusing.

I do think that a strong possibility in PWC's is that adrenal function can be low, or problematic. And adrenal hormones help control electrolyte balance (sodium, potassium, cal, mag), so it may be due to the inability to balance that sodium/potassium balance, which then screws up the other two.

The sun is finally out today, and the weather slightly warming, so I may just try and sit outside for 15 minutes...see if I can get some 'real' vitamin d.

One thing's for sure (at least in my situation) -- twitching / muscle spasms / cramps are always worse in the winter months...

Hi dannybex,

Hope your twitching is better!!! Please consider that if the cal/magnesium sometimes makes the twitching worse that you try the magnesium alone to see if that works for you. No one denies the importance of calcium for the human body, but it is sometimes easy to get more calcium than you need since calcium is supplemented in so many products. Magnesium, on the other hand is not, and magnesium is not added back to the soil which becomes deficient. And even tho you need magnesium to absorb calcium it does not work the other way around. If you have too much calcium, it blocks the magnesium absorption.

Re the calcium excess problem from "The Magnesium Miracle"

"Calcium and magnesium share equal importance in our bodies. Appropriating Newton's law of physics that says for every action there is an equal and opposite reaction, neither calcium or magnesium can act without eliciting a reaction from the other. At the biochemical level, magnesium and calcium are known to act antagonistically toward each other. Many enzymes whose activities critically depend on a sufficient amount of intracellular magnesium (10,000 times more than calcium) will be detrimentally affected by small increases in levels of cellular calcium. Growth of cells, cell division, and intermediary metabolism are also absolutely dependent on the availability of magnesium, which can be compromised if excess calcium is present. footnote - Walker, GM, "Biotechnological implications of the interactions between magnesium and calcium." Magnes Res., vol. 12., no. 4, pp-303-309, 1999

"To understand how you can create a calcium/magnesium imbalance in your own body, try this experiment in your kitchen. Crush a calcium pill and see how much dissolves in 1 oz. of water. Then crush a magnesium pill and slowly stir it into the calcium water. When you introduce the magnesium, the remaining calcium dissolves; it becomes more water-soluble. The same thing happens in your blood stream, heart, brain, kidneys, and all the other tissues in your body. If you don't have enough magnesium to helps keep calcium dissolved, you may end up with calcium-excess muscle spasms, fibromyalgia, hardening of the arteries, calcium deposits, and even dental cavities. Another scenario plays out in the kidneys and bladder. If there is too much calcium in the kidneys and not enough magnesium to dissolve it, you can get kidney stones. Calcium deposited throughout the bladder can make it rigid, lower its capacity, and lead to frequent urination."

Now, I think I'll go outside and grab a few minutes of that sunshine myself :Retro smile:

Hysterical

 

[free at last]

I was going to bring this up, but here it is, Ive had it bad for years, sometimes my whole leg will do it, contract then release.Arms, face, stomach even my damm head on occassion, quite embaressing really. started years before i got ill. Thats not all, i slept with a a women i knew at work. i noticed in the night her muscles doing it, shortly after it started with me, indicating a virus. Wonder if this is associated with XMRV patients too. And maybe i got xmrv ? Might find out that possible link at some point as my blood is now in the states. part of the ashford 50 here. would like to know if Judy M has seen this with xmrv just a thought considering how it started. Hasnt got better over the years, still as bad now as when it started at least 20 years ago

 

[Athene]

Thanks Dannybex and Hysterical for all this really useful info.
I've got a few questions and ideas trying to form in my addled brain....

Do you know anything about calcium and menstruation symptoms? (sorry if this is a bit yucky)
When I take magnesium alone I feel a bit more energetic, but without the calcium I get dysmenorrhea (periods like a haemorrage). When I add in calcium I have more normal menstruation but less energy. I don't eat dairy at all so I think my calcium supplement is probably the major influencing factor here.
Could either of you speculate what may be going on?

I did read that you can get too much blood flow if the uterus muscle is too relaxed so I wonder if that is relevant?

The other thing I am wondering is about the relationship between correct calcium use in the body and vitamin D.
I have too much vitamin D (both active and stored) in me and I have read this means you should not take calcium, as this leads to calcium deposits in various organs - basically the same scenarion Hysterical wrote about in relation to magnesium and calcium. Now my vitamin D has gone down to nearly normal on Meirleir's therapy (no idea what aspect of the treatment is doing this) he has told me to take calcium, 2000 mg a day.
I'd really like to understand what is going on here, if either of you know.

Finally, free at last, I had my worst nocturnal twitching when I first got ill and it lasted about a couple of years then subsided considerably and has never been as bad since then - no idea why. I was a student in those days and shared the bed with my sisters when they came to stay, both of whom opted to sleep on the floor instead because I was basically "having epileptic fits all night" according to them. They said I was having spasms all over my body continuously the whole time I was asleep. There is a type of epilepsy that occurs when people are asleep and I was put on the anti-epileptc drug carbamazepine for that reason, but it didn't help. I'm afraid that was all waffle really, I am just saying that for me, in the initial stage this was a primary symptom of the illness.
I am just wondering if you others get this type of twitching? I am still trying to find out a bit more detail on what Lyme disease-related twitching is like, because I haven't read much about twitching of this type being all that common in CFS... though maybe I am wrong about that.
Any thoughts?

 

[Stone]

Yup, all the time in various places, including fingers and hands. Sometimes I can even get them on the inside of my body which feels a lot like a baby kicking (I'm past child-bearing age). I had my husband put his hand on my belly and feel it once, and it blew his mind. He joked, "If there really is a baby in there, we're going to name him or her 'Awesome'" One time, I was having a spell where I was having twitches on one side of my...well...backside, which would come and go. Well the twitches stopped for a few days and I thought this little episode was over, but it returned at a rather inopportune time, and I found myself standing in a long line at the food court at the mall with half my butt jumping at random intervals. All in all, it was much more funny than embarrassing, so no harm done. I'd give anything to know what the people behind me must have thought...on second thought, maybe not. ;-)

 

[dannybex]

Thanks Dannybex and Hysterical for all this really useful info.
I've got a few questions and ideas trying to form in my addled brain....

Do you know anything about calcium and menstruation symptoms? (sorry if this is a bit yucky)
When I take magnesium alone I feel a bit more energetic, but without the calcium I get dysmenorrhea (periods like a haemorrage). When I add in calcium I have more normal menstruation but less energy. I don't eat dairy at all so I think my calcium supplement is probably the major influencing factor here.
Could either of you speculate what may be going on?

From what I understand, calcium (and vitamin K) help regulate normal blood clotting, so perhaps you do need the calcium, as it seems to be helping.

"Less energy"...perhaps that's a 'normal' thing for right now? Perhaps the magnesium alone is giving you a false sense of 'energy'? Just a guess! :Retro smile:

Here's a study however on calcium, electrolytes and clotting:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1197670/

The other thing I am wondering is about the relationship between correct calcium use in the body and vitamin D.
I have too much vitamin D (both active and stored) in me and I have read this means you should not take calcium, as this leads to calcium deposits in various organs - basically the same scenarion Hysterical wrote about in relation to magnesium and calcium. Now my vitamin D has gone down to nearly normal on Meirleir's therapy (no idea what aspect of the treatment is doing this) he has told me to take calcium, 2000 mg a day.
I'd really like to understand what is going on here, if either of you know.

I'm not a doctor of course(!), but I've read that yes, too much "d" can pull calcium from the bones if one isn't getting enough calcium in the diet -- which may cause bone spurs (and yes, like Hysterical said, magnesium (and other minerals) are involved too). But I've read in several places that while people used to think that calcium deposits were the result of too much calcium, many now believe that it's the result of not enough calcium (and/or no enough vitamin K2 or magnesium).

Here's just one example:

"John Mock, a friend of mine, had suffered from a painful shoul-
der for many years and had restricted his calcium intake assuming at
the time together with his health counselor that excessive calcium
partly precipitated the problem and was responsible for bone spurs
that showed up on his X-rays.

Laurie Marzell, N.D. 31, suggested that his bone spurs were not
caused by excessive calcium but a calcium deficiency, and put him on
a supplement program of 1500 mg of calcium and 750 mg of magne-
sium each day. Six to eight months later, new X-rays revealed that
the bone spurs had dissolved along with the pain he used to feel in
his shoulder..."

that's from:

http://www.arthritistrust.com/Artic...s, Minerals, herbs, Sunshine, Color/index.htm

And in my case I've found that's true. If I take "D" without calcium, then I get loose-ish teeth, and a bone-spurish feeling in my spine...just within a day or two. And recently my doc prescribed (Carlson's) K2 -- 5mgs. That apparently works w/calcium to help bone formation...

Here's one more:

"Actually, vitamin D does not in itself promote healthy bone. Vitamin D controls the levels of calcium in the blood. If there is not enough calcium in the diet, then it will be drawn from the bone. High levels of vitamin D (from the diet or from sunlight) will actually demineralize bone if sufficient calcium is not present.

Vitamin D will also enhance the uptake of toxic metals like lead, cadmium, aluminum and strontium if calcium, magnesium and phosphorus are not present in adequate amounts.18 Vitamin D supplementation should never be suggested unless calcium intake is sufficient or supplemented at the same time."

This is from Krispin Sullivan. She's been studying this for more than a decade...and bases her work on clinical studies. Here's the link for the article quoted above, but I think she has her own website:

http://www.westonaprice.org/abcs-of-nutrition/168.html

Hope that helps...it IS so complicated and confusing.

d-bex


p.s. thanks Hysterical for the mag info!

 

[free at last]

Finally, free at last, I had my worst nocturnal twitching when I first got ill and it lasted about a couple of years then subsided considerably and has never been as bad since then - no idea why. I was a student in those days and shared the bed with my sisters when they came to stay, both of whom opted to sleep on the floor instead because I was basically "having epileptic fits all night" according to them. They said I was having spasms all over my body continuously the whole time I was asleep. There is a type of epilepsy that occurs when people are asleep and I was put on the anti-epileptc drug carbamazepine for that reason, but it didn't help. I'm afraid that was all waffle really, I am just saying that for me, in the initial stage this was a primary symptom of the illness.
I am just wondering if you others get this type of twitching? I am still trying to find out a bit more detail on what Lyme disease-related twitching is like, because I haven't read much about twitching of this type being all that common in CFS... though maybe I am wrong about that.
Any thoughts?[/QUOTE]

No as far as im aware its not that bad, just general movement that varies during the day or night,
but occassionaly quite strong, this started im convinced after sleeping with someone.Before i got ill ? Wondering about xmrv, can it do this ? my bloods in the states now,one day ill probably know. i think its possible it could be some kind of nervouse system reaction to XMRV.The wpi might know.Not sure if i was ever tested for lyme. if i wasnt then thats nuts

 

[michelle107]

i have this a lot, the worst one though is when my eye starts and its always the left one, if im out i look at the floor or it looks like im winking at people....at night its the restless legs..

 

[pollycbr125]

Yup, all the time in various places, including fingers and hands. Sometimes I can even get them on the inside of my body which feels a lot like a baby kicking (I'm past child-bearing age). I had my husband put his hand on my belly and feel it once, and it blew his mind. He joked, "If there really is a baby in there, we're going to name him or her 'Awesome'" One time, I was having a spell where I was having twitches on one side of my...well...backside, which would come and go. Well the twitches stopped for a few days and I thought this little episode was over, but it returned at a rather inopportune time, and I found myself standing in a long line at the food court at the mall with half my butt jumping at random intervals. All in all, it was much more funny than embarrassing, so no harm done. I'd give anything to know what the people behind me must have thought...on second thought, maybe not. ;-)

lol i cant believe what you have posted i could have written it myself this is what im going through at the minute . ive had one side of my bum twitching , i also have the phantom baby thing going on it really does feel like theres little feet on the inside lol . thank god im not the only one i thought id finally lost my marbles

 

[Daffodil]

well im glad i am not the only one with this. it seems to be progressing and the twitching affects my falling asleep too.

i just hope i am not gonna develop MS or something on top of the severe CFS.

i think i am gonna try magnesium and B12 if i can get the energy to go to the compounding pharmacy.

sue
xoxo

 

[taniaaust1]

i had severe twitching.. i ended up having issues with severe spasms and where even my head was being thrown side to side at times with it. Others said it looked as if i was about to go into a full grand mal seizure. i ended up being diagnosed with myclonus as one of my CFIDS symptoms. Fortunately as CFIDS symptoms often do.. things changed and those neuro symptoms left.

 

[zoe.a.m.]

I've had periods of twitching (severe, often waking hundreds of times in the night per a sleep study) which also persisted in the daytime. B12 shots have helped with what seemed an unfixable problem (taken mag citrate and taurate and others to help for years).

Still though, when I am getting sick with a virus (cold, flu, recurrence of ???), the twitching returns. It's often my first signal that something is coming. I'm not sure how to explain this, but it's been useful info for me.

 

[caroljean]

Yes, I have twitching in my fingers to the point they wag back and forth, for some reason mostly in the left hand. I also have twitches in my back and thighs. The neurologists have had no real answers for it. I have come to believe it comes with the territory of CFS, that's for sure as MS has been ruled out. The twitching and tremors have become a part of my life now, so it doesn't bother me like it used to when it first started.

 

[serenity]

this has been happening when i try to sleep lately. as if my body has found one more way to wake me up. the first time it was my fingers & upper lip. the next time was my arm, then the other night arm shoulders & head all at different times.

 

[SteveRacer]

I ended up twitching a lot years ago... before I had CFS (or whatever my current fatigue problem is) I had sleeping problems... for a while nothing would help me sleep. So they gave me Seroquel, which helped me sleep, but caused me twitching. It didn't matter to me too much because it worked so well I'd fall right back asleep even if the twitches woke me up. Years later however, I no longer take it to sleep but I still twitch much more than I ever did. I really do think it is from the Seroquel.

 

[Mya Symons]

Definately. My husband and I both have CFS and Fibro. We had to buy one of those tempurpedic mattresses because not only were we waking ourselves up with our twitching and jerking but also were waking eachother up. I used to have problems with my fingers moving up and down by themselves also. Sometimes when I am daydreaming and in that daydream I am thinking about some body movement that a person does, that part of my body will move. For example, once I was taking a class and after class, I was thinking I should have raised my arm to ask a question, my arm moved up. (and I didn't do it).

When the twitching started for me (and the muscle jerking), this is when I finally knew fibro. and CFS could not possibly be "in my head" like I had been told for so long. Before that I was starting to believe that I was "crazy."

I think this twitching may have something to do with a vitamin deficiency caused by this disease because when I take all my supplements and vitamins it seems to get better.

 

[ahimsa]

I've had some level of fasciculations (muscle twitching) for the entire 20 years that I've been sick. It gets worse when I overdo it or if I've had a bad night's sleep. It's better when I've rested. I do think that taking magnesium supplements have cut it down somewhat but it never completely goes away.

I've had twitches in almost every muscle in my body (but not at the same time) and in places where I never even thought about having muscles. I've experienced twitches in the soles of my feet, on the top of my head (raise your eyebrows and you'll realize that, yes, there are some muscles there), on my stomach, back, arms, legs, etc. So, maybe one day it will be my upper left back, then the next day it's the arch on my left foot (actually that one is happening now as I'm typing), then the next day it's the forearm of my right arm. Then maybe no twitching for a couple of days.

I never know when it will happen, or which muscle it will be, or how long it will last. And as I tried to explain to the doctors, I cannot replicate the muscle movements voluntarily. That is, when the muscle twitches it seems to be one muscle alone, or maybe two muscles, but if I try to move that same muscle voluntarily then a whole group of them moves (if that makes any sense at all).

The twitching shows if the body part is uncovered, e.g., my arms, or my bare feet (they are bare now and I can see that arch muscle jumping) but it doesn't seem to show through clothing (not that I've noticed).

I did laugh when I read that someone else has had muscle twitches on their, ahem, "backside." Yes, that has happened to me, too. The first time it happened I was at a work meeting, in a conference room full of people, and I had to bite my inside cheek to keep from laughing. I really didn't want to laugh because then I would have had to explain what was so funny. I'm a terrible liar and it would have been far too embarrassing to explain to a crowded room that my butt was twitching!

I'm amused that the CDC mentioned fasciculations as evidence of more serious illness (and thus a different patient population) in their XMRV paper:

The 1994 International CFS case definition and the Canadian Consensus Criteria are different and do not necessarily identify similar groups of ill persons. Most notably, the Canadian Criteria include multiple abnormal physical findings such as spatial instability, ataxia, muscle weakness and fasciculation, restless leg syndrome, and tender lymphadenopathy. The physical findings in persons meeting the Canadian definition may signal the presence of a neurologic condition
considered exclusionary for CFS and thus the XMRV positive persons in the Lombardi et
al. study may represent a clinical subset of patients [11].

(see http://www.retrovirology.com/content/7/1/57 )

And yet doctors always seem to write off thse fasciculations as no big deal, not necessarily an indication of any neurological problems. I do wonder which interpretation is correct?

As far as symptoms go, while muscle twitches can be quite annoying (very distracting, kind of like someone tapping me on the shoulder constantly) they are not particularly disabling. I have much worse symptoms to worry about.

 

[Alesh]

I also have this symptom. I think the correct name is something like repetitive myoclonus. It affects one group of muscle fibers at time. For example a bundle of muscle fibers in shoulder and these twitches go on the whole day. There could be several hundreds of such twitches a day. Next it is a bundle of muscle fibers in any other part of body. It is not lateralized. The degree and frequency of these myoclonuses correlates with severity of my ME. It is a sign of neuropathology.

 

[Athene]

I'm amused that the CDC mentioned fasciculations as evidence of more serious illness (and thus a different patient population) in their XMRV paper:
And yet doctors always seem to write off thse fasciculations as no big deal, not necessarily an indication of any neurological problems. I do wonder which interpretation is correct?

Very good point Ahimsa. I've had twitches dismissed by some doctors as nothing, then others react as if I might be on the verge of death. Very inconsistent.

On the topic of weird twitches, I often get a twitching eyelid. It doesn't open and close, but jiggles from side to side. I once had a colleague who thought I was trying to wink at him, and winked back!! He used to wink at me practically every time he walked past my desk after that and I felt too silly to tell him my eyelid had a life of its own.