Jittery feeling, toe twitching, involuntary leg movements and more

Posted by falconhawaii @falconhawaii, Aug 22 2:00pm

Hey, all.  I'm pretty relieved to see this message board.  I'm kind of out of options.  I'll try to keep things short, but I wanna be thorough.  I'm primarily making this post because I live in Japan now, and need advice, in whatever form it may come.  If you wanna skip the history and get straight to the heart of the matter, read the last 2 paragraphs.

First of all, I never considered myself necessarily an anxious person or high stress, but I'll admit that some of these symptoms are intensified or more frequent due to stress at times.  However, I'm pretty sure that even a decade ago, on a very rare occasion, I'd have Restless Leg Syndrome symptoms.

In December 2020, I had hernia surgery.  About a week after the surgery itself, and as tired as I was, I just couldn't get to sleep one night.  I couldn't help notice…my teeth were chattering.  Not heavily.  Barely perceptible, but it was more like I was trembling or something.  I learned to live with it.

Fast forward a few months into the pandemic, and a few sleepless nights returned.  We're talking awake for 24 hours+, super tired, but unable to sleep.  I had a few anxiety-caused sleepless nights in my youth, but this was different.  Like…heavy pressure on my body .  Went to the hospital, had blood/urine tests, brain CAT scan.  Doc said nothing looks wrong, though blood pressure, weight, and cholesterol are a bit high.  But the problem is all mental.  Tried to live with it…

Fast forward again a few more months, same problems, but now a heavier jittery feeling.  Like…having nothing but espresso and no food, and my left foot feeling a little tingly, almost like my bare feet "slipped" on carpet.  Saw a psychiatrist.  She put me on several medicines, one being Landsen.  They helped me sleep, but problems persist.  Tried again to live with it.

Then I developed…I'm not sure!  What's the difference between a spasm, a twitch, a tick, a tremor and a palpitation?  Just about to fall asleep…boom, leg kick.  Not all the time, but enough to not call it a one time deal.  Local psychiatrist put me on different meds, a beta blocker and a serotonin uptake inhibitor.  Didn't really fix the problem.  She assigned me a specialist at the big hospital, with a nerve retention test and brain MRI.  When the results came, he didn't really say anything was unusual, but didn't say I'm good either.  Maybe bad translation.  Bless the Dr.s heart, he has to deal with advanced Alzheimer's and ALS patients, but he seemed very dismissive of me, almost irritated or myopic about it, ultimately saying he doesn't know what it is, kind of like "What do you want me to do about it?" attitude.  Basically, he shrugged.  The kicking thing kind of went away…thought it happened rarely.

During work one day, in December of '21, I noticed my middle toes of my right foot twitching in my shoe.  It was happening kind of frequently when my foot was at rest, but didn't think much of it.
In early Spring of this year, I woke up with my middle, index, and thumb numb.  Maybe I was lying on it.  Strange at first, but then it started happening more, with the whole hand.  One day, it was the whole right arm.  Neurologist time…a different one than before.  This guy put me on Tarlige, ordered a neck MRI, more blood work, and some other Chinese herbal stuff that I didn't continue past 4 days.  A few weeks later, muscle twitches (like heartbeats) randomly happening everywhere, noticed at rest.  Back, shoulder, stomach, calve, thigh, toe, fingers, arm, buttocks.  That's when he mentioned it as a symptom of ALS, mentioning higher CK levels, although my numbness is not a part of that.  No lie, I had a lot of anxiety over this, and body trembling.  Eventually, after looking over the MRI results and other blood work, he says it's "unlikely to be ALS".  So…I've calmed down a bit.  The numbness in my fingers and arm also went away completely. Because of Covid here, I haven't been working all that much.  Doctor basically said my symptoms are from stress, that I'm "lacking purpose", and if I go home for a bit I'll probably recover.  I went home for a month.  I didn't recover.  In fact, I'm now pretty scared.

So we're in the now.  (It may or may not be related, but I had a lithotripsy procedure 3 times in the past 3 months to get rid of a peanut-M&M-sized kidney stone.  We knew about it for years, but just didn't have the time to get it taken care of.  The first 2 lithotripsies didn't do much, but the most recent one seems to really have worked this time, so I'm dealing with all the joys of that at present.)  Since most of the medical professionals I've encountered have been…mm…disappointing, Dr. Google has pretty much been how I've tried to figure out WTF is wrong with me, or how to curb symptoms.  Most of the top contenders for what I may have (ALS, MS, Parkinson's) don't fit the bill, as none mention a jittery or shaky feeling, and all are accompanied by symptoms I don't have.  Teeth are still chattering if I close my jaw just right, but it's not noticeable in daily life (again, more "trembling" than "chattering").  As I said at the top, a lot of these seem to be kind of like side-effects of extreme anxiety.  I know that my wife told me she can feel the "bumping" of my muscles when I was asleep a month ago, that worried me.  A few times in the past week, I've woken up with a heart-racing feeling, checked it as soon as I woke up; 91BPM.  Starting around a week ago, the toe-twitching has returned.  This time, with a very jittery foot when at rest.  This is now constant.  I involuntarily move my foot from time to time.  I almost always feel like I'm heavily caffeinated, even if I ingested none.  I do not drink alcohol, but do drink a fair amount of milk.  My thighs on both legs feel a bit sore, but this might be nothing.  I've been drinking plenty of fluids, and tried electrolyte-replenishing drinks with little effect.  Last night, a horrible impulse to move my leg happened a few times, I assume RLS.  The toe-twitching, once confined to my right foot middle/4th toe, now may be happening to my LEFT foot big toe now.  I'm having a terrible time getting to sleep, even with ZzzQuil or Landsen.  I don't know how else to call this feeling other than "very jittery", but the more frequent involuntary movements have me pretty scared. I know I seem to be getting worse…

I've been on Landsen, Tarlige, Lexapro, and tried homeopathic Hyland's Restless Legs PM, and Nerve Renew.  Please, if anyone has any suggestions, advice, references, or knows a neurologist that can be contacted, or someone even get close to identifying what it is I may have, please reply.

-Brandon

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Hello @falconhawaii and welcome to Mayo Clinic Connect. First, let me say I am glad you've joined this community to get support on this journey. What you are experiencing is real to you and likely all symptoms of something affecting you. Stress certainly can trigger many responses in our body, and medications can address those symptoms but I've always believed that getting to the root cause is paramount.

You mention early on in your post that you feel stress could've brought on some of your symptoms. I wonder if you might be willing to share the types of stresses you can list since the onset of your symptoms. You may share them back here or journal them as a way to get them out of your head just to really take inventory. Next, something I like to do is make a list of them in order of highest to lowest and then make an action plan for how I can address the stressors. This exercise may be able to help you identify if there has been an ongoing stressor in your life that has been increasingly straining to you and your nervous system.

Have you ever considered doing an exercise like this to identify if stress could be one of the factors in what you are experiencing? Are you willing to give it a try?

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Hi Brandon, I really hate when doctors imply that anxiety may be the root of a neurological issue when they can't name the condition. It throws it back on the patient that they may somehow be at fault and if you could get the anxiety under control it would go away – here take an antidepressant and go away. They wouldn't say that to a person with Parkinson's or MS, recognized conditions, but seem to feel it's okay to say it when they simply don't know what it is. It makes you second guess yourself. That's unfair and poor medicine.
Now it's true that some conditions can worsen if the person is nervous, Essential Tremor, for instance. I developed symptoms very similar to yours after receiving the Covid vaccine and got little assistance from doctors. I was not anxious or depressed before the symptoms but may have appeared as such after the fact because I was worried about what happening to me and rightly so. Anti-depressants and muscle relaxants did nothing and in fact some of the SSRI's made the fasciculations (the muscle twitching) worse.
I had to go online and find what condition seemed the most similar to what I was experiencing. For me, that was Benign Fascicular Syndrome. I'm not saying that's what you have but you can look it up. The medical world seems to know very little about what causes it, so no cure, and there doesn't seem to be any agreed upon treatment plan, if any. It is a nightmare to have to deal with, with no treatment to ease it. "Benign" is a bit of an insult to anyone who has been tormented by it. Little or no research is being done on this syndrome because, yes, there are more serious conditions out there deserving research.
We are on our own to find what works. I started taking as many vitamins and supplements as I could that are related to nerve health. I'm trying to give my body a fighting chance to heal and hoping, if in my case it was related to an immune reaction to the vaccine, that it may run its course. I hope you find what works for you.

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I think the COVID Vaccine effected me. A downside to my neurological problems. But all the doctors keep telling me it’s anxiety. Sad b

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@amandajro

Hello @falconhawaii and welcome to Mayo Clinic Connect. First, let me say I am glad you've joined this community to get support on this journey. What you are experiencing is real to you and likely all symptoms of something affecting you. Stress certainly can trigger many responses in our body, and medications can address those symptoms but I've always believed that getting to the root cause is paramount.

You mention early on in your post that you feel stress could've brought on some of your symptoms. I wonder if you might be willing to share the types of stresses you can list since the onset of your symptoms. You may share them back here or journal them as a way to get them out of your head just to really take inventory. Next, something I like to do is make a list of them in order of highest to lowest and then make an action plan for how I can address the stressors. This exercise may be able to help you identify if there has been an ongoing stressor in your life that has been increasingly straining to you and your nervous system.

Have you ever considered doing an exercise like this to identify if stress could be one of the factors in what you are experiencing? Are you willing to give it a try?

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Thank you for replying, Amanda. Sorry for being MIA these past few weeks. Was in the hospital for something unrelated, got my wallet stolen, and had to deal with a ton of other inconveniences.

Sure, I'm willing to try almost anything at this point. Please let me know what you suggest.

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Have you tried wearing Sox to bed? Works for me. Good luck.

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I have found about 6 oz. of (kroger) tonic water with quinine stops such RLS.

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@indianajj

I have found about 6 oz. of (kroger) tonic water with quinine stops such RLS.

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Welcome @indianajj and @wizer, Thank you both for sharing what works for you.

@wizer, is there a special type of socks that you use at night? Do you mind sharing a little more about your diagnosis?

@indianajj, Do you mind sharing a little more about your diagnosis? Do you have RLS?

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Maybe I'm going crazy. My symptoms seem to be getting worse. Going to sleep is very difficult without some kind of sleep aid, and if I wake up during the night to pee or because I left an alarm to early, it's impssible to go back to sleep. This morning it happened. The sensation was a lot like a "carpet burn" type of tingly feeling. I seem to be experiencing sudden movements even when not trying to falling asleep now.

@scotiagirl It does seem like I have many of the symptoms. No tongue twitching, which to me was more of a sign of ALS. But I also seem to be having heartbeat-like twitching in my mid-torso as well as buttocks. Not sure of BLS or ALS would be in those areas.
@pamelaz My mom said it might be the vaccine, too, but I'm having a hard time getting on that bandwagon. I only got up to the 2nd one. I'm trying to think if I had any facilitations before I got the vax…
@wizer I do believe I have RLS, but the uncontrollable need to move sensation is a bit more uncommon, and only happens to me a few times a month. Socks give me involuntary movements during the day, but I'll try it when I have the sensations next time.
@indianajj I'll ask my psychiatrist (since I was dismissed by the neurologist, who she recommended and seems to be the only one taking me seriously) about Quinine if I can get an appointment later today. We don't have Kroger in Japan, but I can at least get Tonic Water. I'll try it, thanks.

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@falconhawaii

Maybe I'm going crazy. My symptoms seem to be getting worse. Going to sleep is very difficult without some kind of sleep aid, and if I wake up during the night to pee or because I left an alarm to early, it's impssible to go back to sleep. This morning it happened. The sensation was a lot like a "carpet burn" type of tingly feeling. I seem to be experiencing sudden movements even when not trying to falling asleep now.

@scotiagirl It does seem like I have many of the symptoms. No tongue twitching, which to me was more of a sign of ALS. But I also seem to be having heartbeat-like twitching in my mid-torso as well as buttocks. Not sure of BLS or ALS would be in those areas.
@pamelaz My mom said it might be the vaccine, too, but I'm having a hard time getting on that bandwagon. I only got up to the 2nd one. I'm trying to think if I had any facilitations before I got the vax…
@wizer I do believe I have RLS, but the uncontrollable need to move sensation is a bit more uncommon, and only happens to me a few times a month. Socks give me involuntary movements during the day, but I'll try it when I have the sensations next time.
@indianajj I'll ask my psychiatrist (since I was dismissed by the neurologist, who she recommended and seems to be the only one taking me seriously) about Quinine if I can get an appointment later today. We don't have Kroger in Japan, but I can at least get Tonic Water. I'll try it, thanks.

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Skullcap is what calms my fasciculations and restless legs.

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