Twitching

[ladybugmandy]

Hello. does anyone with CFS experience muscle twitching or finger and toe twitching?

thanks
Sue

 

[fds66]

yes - lots of twitches - random places all over my body and it can make my fingers move. Magnesium seems to be helping though.

 

[pollycbr125]

yeah i twitch usually my leg muscles most annoying ....... i also do the whole out of body jumping off the bed thingy usually just as im managing to nod off to sleep grrrrr

 

[Min]

yes, thumb sand eyelids - not so bad since I started taking magnesium malate

 

[Mithriel]

Twitching muscles is a commonly noted symptom in ME. It was noted that ripples could be seen across some patients stomachs.

Mithriel

 

[Carrigon]

Me, too. One of the first symptoms I ever had in the 80's was the muscle twitches and I do get them in my stomach. I still get it every day after all these years. Magnesium does help it, but I still get it.

 

[Francelle]

Yes Fasciculations have been an almost ever present issue for me since the start of this condition nearly three years ago. My Fasics happen in quite large muscle groups, not just eyelids or fingers. At my worst, I was having about 30,000 per day. Now only about 1,000 - 2,000 daily.

Even the neurologist I saw when I first developed a constellation of about 25 various symptoms within a couple of months of the onset of M.E./FMS seemed clueless. What gives with these guys?

In no way can I be persuaded to believe that these are 'benign fasciculations' when they are so blatantly associated with other neurological symptoms (PN and GP), as well as the timing of their onset which was when I was initially so ill in 2007.

 

[Athene]

Had lots of these, pretty much all over the body. I was given an EEG and my brain was sending out abnormal electrical impulses. I think there has been reasearch written about this in PWCs. It's like partial epilepsy but not.

 

[dancer]

Yes. Lately my thumb goes into vibrating spasms...sometimes if I hold it a certain way, or just randomly. I sometimes get weird quivers in my legs... the other day my all-over "shaky" feeling, became more specific in a trembling in one knee so that I had to grab the kitchen counter to not go down.

I used to have eyelid twitches, but have been supplementing magnesium for several months and that has improved. When I saw the doc and he did the hammer-on-the-knee test, my legs FLEW (he tested each). He found the over-reaction of that reflex very interesting. Sigh. I''m tired of being interesting.

 

[lostinthedesert]

I had these all over in both small and large muscles. In my case neurotoxicity was a major factor. Detox using sequestrants relieved about 90% of the problem for me but during the initial detox the symptoms intensified and then slowly tapered off over a period of weeks. In order to keep the gains, i have to do a maintenance level of detox. While the twitching and also the crawling sensations do pop back up, the change in these symptoms has been huge for me. I also had improvement in other symptoms at the same time. Peace, S

 

[xchocoholic]

Twiching is so annoying ... most of mine was from gluten but I've noticed that other toxins will cause this in me too. Fabreeze nailed me once ... I use Theanine and the GF diet to control my myoclonus, which is jerking, but I wonder if it would help here too.

 

[Nina]

In no way can I be persuaded to believe that these are 'benign fasciculations' when they are so blatantly associated with other neurological symptoms (PN and GP), as well as the timing of their onset which was when I was initially so ill in 2007.

That is exactly what I've been trying to tell my docs! Healthy people might get twitching too, and then I can accept that they might be benign. But in this constellation it's insane to say it has nothing to do with the rest of our symptoms and that it's not a sign of nerve damage in any way.

 

[xchocoholic]

It's well known now that gluten causes neurological problems so you may want to look at that. I figured this out by hanging out at www.celiac.com and reading about all the symptoms that were eliminated by eliminating gluten. The website called theglutenfile gives some great links for all of this too.

Please don't take this the wrong way. I'm not saying that all neuro problems are from gluten .. heck Fabreeze nailed me, but if you look at gluten as a toxin, like other toxins, they can cause all kinds of problems in our bodies. Gluten just happens to be my worst offender.

Mold is another good example of a toxin ... Dairy is toxic for many. MSG ... Aspartame ... Corn ... The list goes on ...

 

[dannybex]

Twitching, fasciculations, etc...

Very glad this topic came up, thanks for starting it.

I've been a twitcher off and on for years now, perhaps even before I was officially diagnosed with ME/CFS.

It will go away completely for months, even a year or so at a time, but then comes back, often after 'overdoing' it. I think it there can be many contributing factors, or many possibilities.

Here's a few things I've found over the years, and reviewed just last night because my twitching, mostly from the knees down, has been terrible for the last 3 days.

OVERDOING it when we feel 'better' -- pushing -- and crashing. (sometimes unavoidable...)

Low blood volume / poor circulation

Poor adrenal function, thus poor electrolyte balance (licorice root w/white peony root helps me sometimes...brew them for 30 minutes as a tea...also adding salt to water)

Calcium/magnesium is often helpful -- one or the other -- but sometimes either of these can make my twitching worse...does this happen with you?

Vitamin D deficiency can lead to twitching/fasiculations/spasms.

Choline, folate, and/or B12 deficiencies, and/or all three together -- have seen reports online of twitching going away or diminishing when trying these b vitamins.

And suprisingly, not enough fats in the diet, especially saturated fats -- this applies mainly to underweight/skinny types, but is based on eastern (ayurvedic) principals and also chinese medicine. One of the main recipes for muscle spasm/twitching in TCM is egg yolks.

From online:

"Our body also makes adrenal corticosteroid hormones from cholesterol. These hormones include aldosterone, which regulates water balance through our kidneys[/I], increasing sodium retention by our renal tubules; and cortisone, which promotes the synthesis of glucose to prepare our body for fight or flight in response to stress, and also suppresses inflammation."

Might this help not only with twitching, but also low blood volume? I dunno...just a thought.

I wonder how many of us may be not eating "enough" foods like eggs, meat w/skins or some fat? I know I've been kind of cholesterol-phobic, so will try slowly adding an egg, maybe every other day, and see if it helps.

??? :Retro smile:

 

[Athene]

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.

 

[citybug]

Even healthy people get the eye twitching under stress, maybe not enough magnesium. I get twitching, vibrating, hand tremors, crawling feeling in legs, twitching toes. Another patient with leg muscle function problems told me iron was recommended to her by a restless leg specialist. My recent ferritin is in range but low, mostly vegetarian. I've been off vitamin e recommended on the azt thread. want to get back on.

lostindesert, what are sequestrants? same as chelators, edta, dmsa?

 

[flybro]

so...aside from nerve damage, which i guess is nothing to worry too much about, do you think twitching could be easrly signs of MS? dont some CFS patients go on to develop MS?

i guess the MS they develop might not be "true" MS but atypical MS....i dont know[/QUOTE

I think it is a sign of MS, my paternal nan had MS, as such it means I was beleived to be safe. But when I first started getting symptoms MS get comeing up again and again.

I mentioned it to many different doctors all of whom were adamant that as my Nan had MS i was very unlikely to have it.

When I got my FM dx from the reuhmy he was very dissmisive about the MS info. Made me feel foolish.

Since the WPI have commented on XMRV in A-typical MS I have been a lot more concerned about the link.

And yes MS is often misdiagnosed as CFS, along with many other diseases, including genetic issues such as Fragile-X Ataxia.

 

[Hysterical Woman]

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.

Hi Athene,

Regarding the magnesium calcium ratio. You don't necessarily need to take calcium if you are taking magnesium, it depends on what you tissue levels are. High calcium in the body can cause twitching because it blocks magnesium absorption. It's a pain in the rear to try to sort all of this stuff out. I was thankful that I took the tissue magnesium test, but as someone else said on another thread - so many tests, so little time!!

Take care,

Hysterical

 

[Athene]

So many tests, so little time!
I like that, and it's so true.

I've just read that Lyme disease causes twitching, very bad twitching in many cases and especially in face muscles.
I'm getting a "proper" Lyme test done soonish - I've decided it's "test of the month" for June!

 

[Hysterical Woman]

So many tests, so little time!
I like that, and it's so true.

I've just read that Lyme disease causes twitching, very bad twitching in many cases and especially in face muscles.
I'm getting a "proper" Lyme test done soonish - I've decided it's "test of the month" for June!

Also....some many tests, so little money!! :-(