Jittery feeling, toe twitching, involuntary leg movements and more

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?

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.

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

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.

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

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

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?

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.

Skullcap is what calms my fasciculations and restless legs.

If anyone is still here, I have an update. First of all, I have Covid. I think I'm on day 3. I had a very light cough before "Day 1", so I don't count that. Day 1 was bad, fever, body aches, headache, overall weakness. Yesterday was better, now it's just pretty much coughing, phlegm and sore throat. Covid test Day 1 was negative. Day 2 was positive but faint. Day 3 was...barely visable. Not that it matters, I'm not here to talk Covid. It's what I've been experiencing because of it.

So my toe wiggling has really amped up. When this first started, I swear it was my middle toe. But now I know the 3 center toes are moving involuntarily. It seems to be a lot more frequent. 1 year ago, it was rare and just kind of annoying. Now it's every day, every hour. Because of being bedridden, I notice it more, along with my body twitches. I also feel some internal vibrations. I'm kind of large, so I can understand if I'm being really still, it may just be my heartbeat rippling through my gelatinous blubber. But sometimes I almost mistake it for a tiny earthquake. I haven't taken any pills for about 3 days now, since I thought I'd be sleepy enough to go to bed without medicinal aid. But then as I doze off...bam! A kick! Now I'm up. This has happened a few times, sometimes in the middle of sleep.

Before I got Covid, I told my psychiatrist (I only see her for meds, not counseling) my symptoms are getting worse, and I'd like to know if anyone has thoughts, opinions, or experiences on them.
Landsen 5mg - It seems to help get me to sleep, but does nothing for the toes
Diazepam 5mg - To help calm nerves, I guess? I originally only got this to help calm me for a flight.
Neupro Patch 2.25mg - AKA Rotigotine. She said it's the lowest dosage available for people suffering from Parkinson's twitching. I haven't tried this one yet, and really need input here. This one frightens me a bit.

As for Scullcap, I ordered some. It comes tomorrow.

I know this is some kind of myoclonus. BLS is a possibility, and RLS is almost a sure thing (though that is rare, once or twice a month, maybe). Recently I came across PoLMT, which also could be it. But is there anything else that can rule out Parkinson's, ALS, or any of the other biggies? I just don't have certain symptoms, but everytime I have a sudden movement, the thought enters my brain. Thank you all for reading this far, and any further input.