Twitching- help

[Jpac]

Sometimes I just need a reminder. While I have been bothered by finger and foot twitching...especially at the onset I have been mostly twitching free. About a week ago both feet start twitching and buzzing a lot. Can feel it when I’m still or in bed, but hard to notice while I’m on the move. While I have already visited a neurologist last year and don’t have any obvious signs of a named(lol)central nervous disorder I always get fearful or things like als and ms. I thought I read that onset of those would typically start in a limb not both simaltaneously...but who knows. Fear and anxiety have the best of me again. Any thoughts or feedback may be helpful. Thanks

Joe

 

[wigglethemouse]

Not sure if you mean muscle twitches. Magnesium or transdermal magnesium oil can help with those.

 

[scienceshea]

Hey Joe,

Just to offer some consolation, I'm right there with you. Twitching was my first symptom that brought about noticeable concern, mine started as an eye twitch that lasted a few weeks but then seemed to start moving around to my arms, legs, and low back. Early on it was much worse and very noticeable, I too was fearful of a dreadful neurological disorder. That was nearly two years ago, and while I still twitch at times, most noticeably at night when I lay in bed or while I am relaxing on the couch, it has become less frequent and less intense.

I have had two neuro exams and an EMG that my neuro said looked fine. There are still times where it is hard for me to completely dispel the concerns of a neuro disorder but I remind myself that I don't have clinical muscle weakness (I have a bigger issue with muscle fatigue and recovery) and that hopefully with all the doctor visits I make something like this would have been picked up on.

I wish I could offer some helpful suggestions on how to squash the fear and anxiety that go along with this, but there are still times where I struggle with this myself. The most helpful thing for me has really just been hearing about other people with similar struggles who are carrying on. Although I'm not an active poster here I do check in regularly. Best of luck and as always try to stay positive!

 

[gregh286]

Sometimes I just need a reminder. While I have been bothered by finger and foot twitching...especially at the onset I have been mostly twitching free. About a week ago both feet start twitching and buzzing a lot. Can feel it when I’m still or in bed, but hard to notice while I’m on the move. While I have already visited a neurologist last year and don’t have any obvious signs of a named(lol)central nervous disorder I always get fearful or things like als and ms. I thought I read that onset of those would typically start in a limb not both simaltaneously...but who knows. Fear and anxiety have the best of me again. Any thoughts or feedback may be helpful. Thanks

Joe

Minerals. Potassium and magnesium. Mineral wafers that dissolve or loads of avocado and bananas does the trick.

 

[jesse's mom]

It seems to me the more I push myself the more twitching I get. I get them in the eyes, the left side of my mouth, the right arm. The movement in my left foot has been diagnosed as restless leg syndrome. I take magnesium, and spray magnesium directly on the muscles that are twitching. The funniest twitches I get is the muscles that my glasses sit on behind my ears. My glasses will actually wiggle on my face. This reminds me to keep a sense of humor!

When I am in a crash it is the worst! I crave avocados, and for some reason asparagus. I not really like bananas, but can tolerate them better when this is going on.

Best of luck to you!

 

[Wishful]

I had tremors in the early days of ME, mostly in the fingers, but occasionally elsewhere. They eventually went away. Not sure if there was any dietary change (minerals or whatever) that made a difference. I didn't take anything specifically for the tremors.

 

[Wayne]

mine started as an eye twitch...

I get them in the eyes, the left side of my mouth, the right arm.

I inadvertently discovered that a DMSO/Magnesium Oil mixture applied to my eyelids was able to get rid of all my eye twitching wtihin just a couple of days.

 

[jesse's mom]

Just checking in to see if you are having any improvements.

 

[Jpac]

Just checking in to see if you are having any improvements.

Nope, may have gotten a little worse. Hard to tell. Feel it constantly when I’m still. I did visit neurologist this past week and he said it appears benign. Without any visible weakness he doesn’t believe it’s ALS. I also have mild nueropathy from knee down in both legs. It comes and goes...bounces from one leg to the other. The real scary part is I’ve had generalized muscle atrophy for the last 2 years...but again no weakness. Something just not working right at the neuromuscular junction. Thx for asking.

 

[jesse's mom]

Hang in there @Jpac

 

[Neunistiva]

I had leg twiching and eye twiching for several years before I developed ME/CFS.

Occasional leg twitches persisted during my illness, but doctors were never able to captured them during EEG because they only happen a few times per day. All brain MRIs I had were normal.

I have progressive type of ME/CFS, constantly getting worse and developing new symptoms, and about a year ago my twitches progressed into full fledged mycolonus and severe dysautonomia that only stop when I take medication, although random muscles all over my body still keep twitching (I wrote a detailed story about it in another thread).

I rarely am ever able to sit or stand up but I noticed that when I wear compression stockings those symptoms are less severe.

I too worry what it is, since it's not really something I commonly encounter in people with ME/CFS, and I deeply regret not getting a neck and spinal MRI when I still could.

However, since it's been a year and I'm still alive, I hope it's just another manifestation of severe ME/CFS and not dangerous, although extremely disabling.

 

[sunshine44]

I had leg twiching and eye twiching for several years before I developed ME/CFS.

Occasional leg twitches persisted during my illness, but doctors were never able to captured them during EEG because they only happen a few times per day. All brain MRIs I had were normal.

I have progressive type of ME/CFS, constantly getting worse and developing new symptoms, and about a year ago my twitches progressed into full fledged mycolonus and severe dysautonomia that only stop when I take medication, although random muscles all over my body still keep twitching (I wrote a detailed story about it in another thread).

I rarely am ever able to sit or stand up but I noticed that when I wear compression stockings those symptoms are less severe.

I too worry what it is, since it's not really something I commonly encounter in people with ME/CFS, and I deeply regret not getting a neck and spinal MRI when I still could.

However, since it's been a year and I'm still alive, I hope it's just another manifestation of severe ME/CFS and not dangerous, although extremely disabling.

yes similar things here, twitching in my head muscles, eyes, feet, legs, arms and other areas....even liver gallbladder area like organs or intestines?! it is so horrendous...i let my mind wander too but despite being bedridden still alive i tell myself.

 

[Desertstorm]

Mine is in a shoulder that was injured years ago as well as thighs and feet though I have little feeling in the feet any more. I have been taking all sorts of minerals and other supplements for a few years now.

 

[gbells]

A lot of people are suggesting that the twitching is just normal twitching from fasciculations. I don't think it is. I also had a lot of irregular twitching when I first developed CFS. It was very abnormal for me in that it lasted a long time and affected multiple muscles. It was initially very strong but then tapered off at two weeks.

I think the actual cause is due to the infections that are causing the CFS. Most CFS patients have Epstein Barr virus and many have animal contact. If you have EBV and then get some bacterial infections (i.e. bartonella) from say your cat the two allow the EBV to penetrate faster and deeper than it normally could. The more EBV you have to more it inhibits the immune system in several ways. Normally when you have an infection of a nerve by a virus the body goes through the apoptosis process to kill the infected cell. In a nerve that would show a twitching response because of denervation. However, If you have a lot of EBV above a threshhold value this process is aborted by the immune inhibition effect. This explains why initially I had a lot of twitching but then it tapered off.

Potential fasciculations may also persist after a distal nerve block. This suggests that fasciculation potentials may originate anywhere in the axon, probably within the distal axonal arborization. However they are known to be associated with a hypersensitivity of denervated muscles.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4192433/

 

[Neunistiva]

@gbells My twitching got worse over time with increased severity of ME/CFS. It also is followed with other dysautonomia symptoms.

 

[gbells]

How long have you had CFS for? Did you have any other denervation diseases and what were their timing in relation to the CFS?

 

[Neunistiva]

How long have you had CFS for? Did you have any other denervation diseases and what were their timing in relation to the CFS?

Almost 10 years. I've never suffered from any other illnesses.

I had very extensive medical workup when I first came down with ME/CFS including brain MRI, EEG, and two types of EMNG. Of course, it's possible they missed something or that something new developed since then, but all clues point to it just being a consequence of severe ME/CFS.

I don't want to hijack this thread and about a year ago I wrote in detail about these neurological "attacks" in another thread so I won't go into too much details here.

 

[gbells]

Sorry to hear how bad your illness is. In the other post you state that you have POTS. CFS with POTS is one subtype that makes up 40% of cases. I have read one article from an MD who said that is it probably from an autoimmune, not infectious, cause. That would make sense because it would give a mechanism to attack the nerves.

I think that 60% of cases are of the subtype I described (infectious) while 40% are the second POTS autoimmune type.

Have you ever seen a rheumatologist? They handle autoimmune diseases.

 

[Neunistiva]

@gbells Thank you. I am quite severe, and constantly getting worse. I even need help typing this.

I have seen several immunologists and rheumatologists over the years. They have done every auto-antibody test abailable to the clinicians (I think more than 30 in all. 40? I lost count). I am negative to all, save for antigliadin antibody, but

1. I don't have celiacs
2. Strict gluten-free diet didn’t do anything for me, except lower the number of antibodies to normal
3. I've been positive for those antibodies for years before developing these symptoms

I haven't done CellTrend tests as they are pricey and for now uninterpretable.


While immune system is certainly involved in ME/CFS, one way or another, I think we are far from certain that it's involvement is autoimmune or that there is an autoimmune subset at all.

Just look as an example Dr. Phair's hypothesis about tryptophan and serotonin he has been posting in detail on PR last few days. Serotonin, among many other things it does, influences vasodilation and -constriction and norepinephrine. Exactly those things that are broken in POTS. Not to mention that some of the kynurenine metabolites are neuroactive and some immunoregulatory.

My point being, there are hundred different things that could explain these symptoms, no tests outside of research yet available, and we are left to wait hoping it will stop as mysteriously as it started, or that we will accidentally stumble across something that will help us.