Jittery feeling, toe twitching, involuntary leg movements and more

How are you doing with this condition? Has anything changed? Is it the same, better, worse? Have you had any luck with diagnosing this?
I found my way here because I have involuntary toe twitching in my left foot. I am at a loss whether to see podiatrist, neurologist or MD. I am in Naples, FL right now and podiatrist here thinks it's threefold, 2 nerve entrapments in my ankle. , and scar tissue under my foot along the plantar plate. He has recommended a supplement Formula 303 to calm anxiety and muscle spasms and twitches and I do believe it has quieted down the movement. What is confusing is that I know these symptoms can be caused by a myriad of things. I am seeing a chinese massage therapist now. This all started during COVID when I was sitting on my recliner sofa with my legs up for months on end. Chinese MT said this is very bad way to sit as it compresses the lower spine and tightens the gluteal muscles which press on nerves going down the leg to the feet. As the MT worked on my spine I could feel a change in the way the tingling felt in my foot. I do think there is a connection.

Toe twitching that kept me awake at night was the first symptom of my Pfizer vaccine injury. I subsequently developed sensory and motor polyneuropathy documented by EMG. My ANA titer increased 4-fold at the time my neurological symptoms were peaking, so the nerve damage was likely caused by an autoimmune reaction to the vaccine. I had not had an autoimmune problem before. The neuropathy is slowly improving and I'm much better now at 24 months.

Hello Brandon (and others). First of all, I am so sorry to hear about your symptoms. You must be freaking out.

I share a lot of your symptoms, but not entirely. I am not worried about ALS at all because, from what I have read, by the time people have symptoms like this, they are further along in the disease. I have had symptoms for over two years now and they haven't changed very much, which tends to rule out ALS. Of course, this is is not a medical opinion and is just what I have read online, for what it's worth.

I sometimes worry about early Parkinson's because that disease can involve a slow and gradual increase in symptoms, most of which are not very dramatic at first. However, my neurologist says that I don't have Parkinson's disease. Unfortunately, it's one of those diseases that cannot be diagnosed until years later when the symptoms converge into a more obvious collection of symptoms. I don't even want to believe that I have Parkinson's disease because it is just too depressing to think about it. Also, if you are under 40, it is quite rare to get this disease. ALS is far more rare though. Parkinson's is the fastest growing neurological disease out there.

MS is easier to rule out if you have had a brain MRI in not all, but most cases. Some doctors will jump hastily to an anxiety diagnosis quickly unless you truly have a culmination of symptoms that are leaping out at them. That is what a lot of people have said in the Facebook "Internal Vibrations/Sleep Tremors" group, as well as the "Internal Tremors" group.

I also get the occasional jerking limb just as I am drifting off to sleep, like you. Those are called hypnic jerks and they are a separate condition. I believe hypnic jerking also has a facebook group and those people sometimes take medications like Diamox to control it when it truly interferes with sleep . However, please don't quote me on this.

In my case, I have not had finger twitches lately, but for a while a year ago, my pinky would twitch randomly and it was freaking me out. This is common in the BFS group and those people don't generally have any worse neurological disease (BFS is harmless, supposedly). My body does tremor or vibrate when I am asleep, but it doesn't happen once I am completely awake and conscious. The hypnic jerks are not the same as the sleep vibrations though -- -and that type of tremoring is different from a Parkinson's or MS type of tremoring because it is not visible at all. It is like a kind of "internal tremor." Is that what you experience?

Mayo Clinic has a program called Central Sensitization Syndrome (CSS) which is popular with people who have experienced nervous system damage from covid or the vaccine. However, my symptoms did not start as a result of covid or the vaccine and it sounds like yours didn't either.

Please feel free to get in touch with me if you'd like to talk more about it. Best of luck! I wish you a fully recovery.

How about low levels of Vit B12???

Had you ever been on an SSRI before being diagnosed with BFS? They say I have that as well and it's been nearly a year. Some weeks are better than others, but I feel like stress / anxiety does contribute to it. Meditation I believe helps, but certainly doesn't knock it out.

What SSRI did they put you on?

Hi Brandon!

First of all I’m very sorry you are going through all of this I’m sure it feels like a rollercoaster and you just want answers. Keep fighting for answers because they are worth it. It’s awesome you are going to different doctor’s and trying different treatments to see if they work I’m glad you are advocating for yourself it sounds like! Advocating for yourself through this journey is one of the most important things you can do for yourself.

So I’ll start off by saying of course I’m not a doctor so none of this is a recommendation but it’s my experience. I was diagnosed with mis-diagnose with Ankylosing Spondylitis in 2020 and prior I had doctors saying “have you seen a therapist”….which was tiring.. I applied for the Mayo Clinic in October 2020 and ended up going early 2021 and was newly diagnosed correctly with Fibromyalgia, Central Sensitization Syndrome, and Chronic Fatigue.

Stress is a main contributor to what started my chronic pain but I had a car accident in 2020 that shifted my pain from just my low back and hips to full body pain and more symptoms.

In 2022 I had an injury that ended up resulting in a concussion and it doubled my pain levels and gave me more body twitching, jaw pain, eye pain, etc. I have headaches which turn to migraines easily, I have head to toe pain, I have body twitching, my feet burn, and more. I haven’t been diagnosed with anything else new yet but I also haven’t been to Mayo Clinic again since my injury happened in 2022 so I’m not sure if I have any new issues.

If I were in your position I would start looking into YouTube videos of fibromyalgia and central sensitization syndrome first (all those google definitions get too jumbled I think) then chronic fatigue and see if any of those align with what you’re feeling and going through! If it does then maybe bring the condition up to your doctor and definitely advocate why you think it could be that condition.

Also my body personally hates dairy and any processed food or sugar. It sucks and I have to get back to healthy eating but I used to be in the routine of it and I could definitely feel a difference with more energy!

I hope that helps in any way and I wish the best of luck for your health journey you got this!

Have you tried daily magnesium glycinate? Your symptoms are similar to those I had due to low magnesium.

Although not all of your symptoms align, I would suggest taking a look at Stiff Person Syndrome. I have it myself and it is a spectrum disorder. There is a jerking type, which I do not have. I present as more classical, although all labs, MRIs, X-Rays and EMGs were normal. I concur with possible fasciculation syndromes. Also maybe Complex Regional Pain Syndrome. I hope this helps and please keep researching.

Do you exercise? You’re depending on a lot of meds to relieve you of your symptoms without success it appear thus far. I too was developing RLS type symptoms and found they were related to lack of muscle use. I now stretch before I go to bed as well as when I awake. My leg issues have gone and do return if I don’t follow my HEP.

I know it’s been 1 year since your post @falconhawaii
but thought I would comment. By coincidence, I’m also based in Japan now and have experienced similar BFS symptoms as you described in your message.
The calf twitches started shortly after arriving in Singapore on a business trip back in April/2023. I had experienced mild twitching and cramps in my calves in the past when dehydrated, pretty common stuff. But this time was different — the night after arriving in Singapore was rough, soon after going to bed, both calves started twitching uncontrollably, and soon the painful cramps came. This went on all night, nearly impossible to sleep for more than 10-15 minutes at a time.
The twitches went on 24 hours a day and the night cramps continued. As I was scheduled to be in SG for 2 weeks, on the 4th day after very little sleep and feeling increasingly anxious, I visited a neurologist there. The moment he saw the rapid twitching in my calves he observed that there may be neurological issues and I would need the standard nerve tests done.
I decided to wait until I returned to Tokyos to get them done.
The short version is that 3 weeks later I had a variety of standard nerve tests done by a neurologist. Everything came out “normal”, while the neurologist observed the constant twitching he concluded after the tests that the twitches were not related to a neurological condition.
I visited “ Google guru”for answers and as per advice from many in the chat groups, made a conscious decision not to go down the ALS/MS rabbit hole. I started to reduce and evaluate eliminate caffeine from my diet, very tough as a coffee lover. And then reduced alcohol consumption to next to zero. This seems to decrease the twitching significantly although still there 24/7, less night cramps.
One thing is clear — for me at least, the calf twitches are much heavier when I am stressed, and lacking sleep. Add in too much caffeine during the day and a glass of wine or two and I know I have a very rough night ahead.
I’ve accepted that BFS may never fully go away, and instead of beating myself up about why it appeared in the first place, I’ve decided to do my best to cope with it.

Sleeping pills, neuro blockers (epilepsy drugs), etc…do help with sleep but I’m weary of the possibility of addiction so I’m resisting taking these drugs for more than 2-3 times a week.

It’s amazing to see how many people are dealing with BFS around the world and yet there is no effective treatment yet. Hopefully there is a break thru one day soon…for now, I try not to think about it and in turn, do everything I can to reduce the risk thru diet and overall wellness. Hope this helps!