Benign fasciculation syndrome (BFS)

Where did you have the injections? Can you describe how they felt, when you noticed things changing, and how frequent the twitching was before and after?

Who performed the injections for you?

I've only heard of this being used for eye twitching.

Good questions! There is some evidence for botox effectiveness in treating bfs-type symptoms: https://pubmed.ncbi.nlm.nih.gov/35302525/

I had almost constant twitching in my left deltoid before the injections, which kept me up at night and made my life pretty miserable. My shoulder responded to meds including gabapentin and pregabalin, but I didn't tolerate either well at all - even at the lowest doses, I had extreme fatigue, depression, "dullness" and feeling pretty slow.

I got injections all over the delt (it's a big muscle!) by a chronic pain physician, who I was referred to by my PCP. The procedure consists of a few minor pin pricks in the affected region. I would say it took about 2 days total for it to kick in, but indications are that it could take up to a couple of weeks for some. It didn't eliminate the fasciculations entirely, as I felt some vibrations over the course of the 12 weeks between injections, but the repeated painful spasms that kept me up at night stopped almost altogether until a few days before the second injection, when they began to return in a reduced form.

I see.

I have them everywhere. If they were only in 1 spot and I had cramps then I think it would make sense to try it.

I doubt I can just inject my entire body with botox. My calves are the worst though. No painful cramps thankfully. Just perpetual fasciculations.

I’ve been living with BFS for close to three years. Not terribly debilitating, but within the past few months, I’ve began getting more cramps in my calf area and tightness and pain in my feet. I’ve recently been suffering from recurring rashes and hives. It could be due to seasonal allergies, but I’ve looked into MCAS as a possible cause of my skin condition. Im No wondering if a histamine intolerance isn’t the underlying cause of my BFS. Of course stress can increase histamine levels and I have been a very high stress person (undermethylator) my whole life. I’m now looking into hormone replacement therapy (testosterone) as a means to calm down my histamine. I’ve researched that testosterone can help those with MCAS or similar conditions. I’m curious to see if it will help with the fasciculations. My neurologist just prescribed me Cymbalta and it made me feel anxious. I stopped using it after only a week.

It could be hormonal/histamine related.

You need to give anti depressants a couple months before deciding if they're working on not. They often make people feel worse before feeling better. Try to stick it out for 2 months following docs orders.

You can increase testosterone with resistance training and good sleep/eating habits and eliminating alcohol as well.

I am in my 30's and was recently told I have BFS after receiving a normal EMG and neurological exam. My twitching has gotten worse. It is non-stop in my feet and frequent in my calves and thighs. I also get twitches in my head, lips, back, stomach, and arms. No one has given me any suggestions for how to help the non-stop twitching in my foot/feet. Everything gets worse with exercise, especially my feet. Just looking to see if anyone else has ideas on anything that could help give me some relief and in turn, help my anxiety about it all!

Hello @crenee. Welcome to Mayo Clinic Connect. I am sure this has been concerning for you, to say the least. This may seem elementary, however, have you had a full blood panel workup to ensure you aren't also deficient in some of the key nutrients that can cause muscle spasms, such as Vitamin D, Vitamin B, and Calcium, just to be sure there isn't anything like that adding to your symptoms?

I would also like to bring in members @thenewrick @steve257 @marvel61018 and @pauliwog1949 who may also be able to rejoin the discussion and share some information with you.

Were thyroid and calcium tests included in your evaluation?

Hi! Thanks for the response! Yes, a lot of blood work was done. Thyroid, mag, creatine, etc all came back normal. They said that bfs really doesn't have great research on the cause or tx. Trying to trust the doctors and normal EMG.

@captainanxiety8 I am at the start of my fasciculation “journey” (two months in) and it has been so scary. Thank you for sharing your experience, I have found comfort in your posts and the response of the mayo community. Your experience is relatable and gives me hope that I am indeed OK (or going to be OK). Thank you again for your posts and for being a reminder that I’m not going through this alone.

Reading this thread has been very comforting to me, so I made an account and I'm going to pitch in with my experience. 32 year old woman here.

Towards the end of June (about 2.5 months ago) I began experiencing a sensation that felt like pressure was being applied to my throat, with no discernible cause. I became increasingly unsettled by this sporadic feeling, which would sometimes last for hours. I had a thyroid ultrasound (7/15) which came up with basically nothing (I have two benign nodules just hanging out in there) and an endoscopy (8/14) and barium swallow test (8/25) which were both clear. The sensation largely went away on its own, unexplained, toward the end of July (tests felt unnecessary since symptoms were over).

However, on August 2nd, I had what I believe to be a panic attack that awakened me from sleep around 1:30 in the morning. I have a long history of anxiety/depression, but I've never had a full panic attack. This consisted of about... 5-10 minutes of elevated heart rate, uncontrollable full-body shaking, and a consuming thought that my death was imminent.

After this happened, I became unable to sleep. My appetite plummeted (VERY unusual for me) and I've lost somewhere around 17 lbs. I'd be overcome by extreme anxiety any time I tried to sleep, and I started developing muscle aches in my limbs.

Two weeks or so into the sleep deprivation (which was severe enough that I started hallucinating a little at night after not sleeping at all for several days on end) I began experiencing muscle twitches. The twitching started in my left calf and spread to the thigh and foot, and then the right leg and right arm started getting twitchy. I also had (well, have) some numbness.

I immediately became terrified that I could have ALS and managed to get in to see a neurologist on 8/22. She did the standard neuro tests (which came back normal), ordered some bloodwork (also normal) and gave me a script to get a brain MRI with and without contrast, and an EMG, but she assured me that she did not think I had a serious neurological issue.

I got the MRI done on 8/28 and recently the results came back clear. I did the EMG/NCV on 9/1 and it also returned clear. I am somewhat frustrated that the muscle twitching wasn't happening during the EMG/NCV, because I feel like it would've picked up something, but the doctor assured me that there was no evidence of muscle deterioration indicated. However, there was no evidence of ANYTHING, and all the negative tests have been the opposite of reassuring. I felt like the doctors should’ve at least discovered a pinched nerve or something, since my limbs have been feeling so weird and thobby and numb.

The muscle twitching has been by far the most disturbing symptom, though, and has been preventing me from sleeping. I took a video of it to prove it, and I’ve generally been obsessing over how to explain the sensation to others. My family and friends generally believe that my anxiety has caused this, an opinion that sometimes angers me and sometimes comforts me.

There is a lot I didn't know about the medical realm, and unfortunately I have been panic-googling a lot. Like, the average person doesn't know the difference between a fasciculation and a spasm, but I sure as hell do now. I know, objectively, that it would be very statistically unlikely for myself (a 32 year old woman with no family history of neurological disorders) to develop ALS, but it is scary and not IMPOSSIBLE, and muscle twitching is such a hallmark of the disease. Learning that my body could just be doing all this weird stuff (BFS) without that same weird stuff actively working to kill me (ALS) has been a real relief, and hopefully reduces my anxiety for the near future.

My PCP is in communication with my neurologist, and they are going to look into any other testing that could be done, but honestly, I think it is a bit of a waiting game. If I'm markedly disabled in the near future, I have ALS. If I am not, I have BFS. And the latter is far more likely.

I guess I do have a question for anyone else reading this - does anyone else have numbness / soreness occasionally alongside the twitching?