Benign fasciculation syndrome (BFS)

Hi! I have yet to see a connection between flare ups and stress in my case. Tho I manage low level stress at all times raising two teen girls and working as a psychotherapist... Yet still doesn't match flare ups. The only connection I've found is high temperature weather and the heat on top of left foot. All weird.

I'm 55 and about 3 months ago, out of the blue, my left bicep and triceps began to twitch vigorously pretty much non-stop for a few days. Began to taper off after about a week, but would start up again and last for hours. Was waking me up and making it difficult to focus. Spoke to my PCP and she ordered a bunch of blood work to rule out something simple. Everything came back "normal" which was surprising to me.

Went to a neurologist and have to say when I was sitting in the waiting room I was in full panic attack mode (BTW, I am considered to have panic attacks after a bout of cardiac issues a few years ago that turned out to be caused by hyper-functioning thyroid), heart rate was off the charts, BP was extremely elevated, and I was sweating profusely. Could barely speak when I got to the exam room as I was sure I had ALS. Neurologist performed a pretty thorough physical exam and gave me the same diagnosis as many have stated above: no signs of weakness, atrophy, or any other obvious issues. Probably anxiety (prescribed an SSRI), could be BFS, and suggested an EMG/NCV exam. Felt better immediately after the exam. The SSRI makes me have other weird sensations, but in combination with meditation and mindfulness, has helped a lot. EMG/NCV results came back normal (actual statement was "perfect") and was sent away with suspicion of GAD/Panic attacks and scheduled a follow up for December.

A week after the EMG I sprained my left wrist, got some cortisone shots, and told to wear a splint for ~ 8 weeks. Forearm muscle shrunk a bit (as it has been immobilized by the splint) which triggered "atrophy" in my mind. Twitches came back with a vengeance all over my body. Arms and legs feel week, pain/discomfort that doesn't respond to NSAIDs, and I just feel terrible. Interestingly, when I am busy doing something I don't notice any twitches or discomfort - when I stop and look at my arm everything starts up again.

I am a true believer that anxiety and stress is a major factor. I strongly encourage everyone with symptoms to pursue testing with a healthcare provider, but in addition to many of the things mentioned here, good mental health practices are important. Mindfulness and cognitive behavior therapy are very helpful. Once you get answers from a physician who has done due diligence, it is importnat work to accept the diagnosis and come to believe what you have been told. If you truly have a condition, it will continue to manifest itself. However, if it is stress and/or anxiety, controlling that can have a major impact on quality of life. Be an advocate for yourself when you go to the doctor and continue with routine follow ups, but also be an advocate with yourself and remember that most of the most horrible and serious conditions that are associated with fasciculations (e.g., ALS, MS) are also relatively rare. Don't do searches on Google; Dr. Google didn't go to a good medical school. This is easier said than done. If you are going to go on the internet, look for things that can help you feel better. Learn about managing stress and anxiety. If you want to read about conditions, use Google Scholar and get peer-reviewed research papers and read the entire paper.

Finally, be careful with supplements/vitamins/minerals, etc., unless you are followed by a physician and tested regularly. You could end up doing more harm. Prescription drugs are required to disclose potential side effects, most supplements are not, nor are they studied rigorously.

Hello @miserablebugger, Welcome to Mayo Clinic Connect. Thanks for sharing your experience and helpful tips on using Google Scholar - https://scholar.google.com/. It's one of my favorites for finding medical research information. I like the ability to sort by year.

Your member name made me smile after I read your post, mostly because after reading through the post, you seem like a glass half full type person and not a glass half empty. Are you able to share what has helped you the most?

Hi @johnbishop, thanks for the response. I'm a very conflicted person. I am a scientist that works in drug development so on the one hand I understand the biology and all of the nuances of high consequence disease (which is a blessing and a curse). On the other hand, I am a pessimist, suffer from somatic symptom disorder, and in general I am a "miserable bugger." Overcoming my cynical attitude to some of the items below was the first step.

I have not received a medical diagnosis of BFS as it is too early in my journey with these symptoms. The NCV/EMG test results certainly were reassuring. I work with a therapist on how to control my pessimistic outlook on health (and she has been instrumental in helping me overcome my cynicism.) However, for the last 3 months I have really committed to mindfulness, managing anxiety, and using CBT to bring rational thought to my emotional reactions to somatic sensations. they are not 100% effective, but these practices help a lot.

One of my key learnings is related to the aging process: our bodies change constantly and will experience "different" sensations as we age. While some sensations are worrisome (and, as I stated previously, should be professional evaluated and monitored) not all "different" sensations are ominous signs. Understanding that we need to do things to make ourselves feel better is important. These can be physical, emotional, and/or educational in nature. Finding what works for you is key and is likely going to be somewhat unique.

Most importantly, dealing with these things from an enlightened position has been most helpful for me. Specifically, reading factual information, speaking to experts, and getting advice from reliable sources is essential. Avoiding the sensationalism in the world is important. It certainly is easier to worry and fret (and I still do my fair share of that) but recognizing that those thoughts are happening, acknowledging I am having those thoughts, talking through the rational facts, and regaining a sense of control is very rewarding in my case. I still feel the twitches, fatigue, etc., but my anxiety is less when I employ these approaches.

Thanks for the response @miserablebugger. I too am into dealing with changes due to the aging process and at 77 I'm hoping the light at the end of the tunnel is not a train 😉 I just try taking all the aches and pains in stride one day at a time while enjoying the moment. There is an Aging Well Group that has discussions you might be interested in or you can start a new one if you don't find what you are looking for - https://connect.mayoclinic.org/group/aging-well/

This is so me. I’m terrified daily. I have had constant twitching for a year and a half. No other symptoms. All over. Mine too sometimes last for a week or more in one spot and then others come and go. It’s so odd. I don’t have them when I sleep but the second I wake up they start. I don’t feel stressed and I am healthy otherwise. I can’t decide if it’s anxiety or not. The twitching definitely causes anxiety but if I didn’t have them I don’t feel anxious. However, I do always worry about myself medically. I had an emg which was normal. I asked him what else we could test he said nothing which I don’t believe.Mentioned something about a sodium potassium channel? I’m willing to do anything to rule out a motor neuron disease. And then I read you can’t rule that out for five years. That makes this doubly worse. Thinking of getting second opinion But it’s All getting so Expensive And feel I’m crazy And just need to let it go.... I’m at a loss.

@krfreitag
Hi and welcome to Connect. Firstly, please don't get into a headspace where you are thinking you are crazy. You are justifiably annoyed by this, and that is perfectly normal. I'd hold off on spending on further expensive consults with doctors for now. For one thing, the medical community does not know what causes it. Also, they seem to mostly recommend drugs to treat it. Not a great option for something that is not causing nerve pain and is not keeping one from leading a normal life, albeit a less pleasant one.

I understand why you feel anxious about this issue, especially the fact that you can have a twitch in one place for such a long time. I imagine mild BFS is common as I too have had twitches on occasion, but not often and not for more than a few minutes or a half hour at most. I remember one not long ago in the leg while I was in bed at night that went on for about a half hour. Mostly an annoyance in my case, nothing more. For you it's different obviously. I would recommend reading as much literature online and elsewhere as you can. If there is a treatment out there somewhere you are more likely to find it yourself than hear it from your average medical practitioner because the conventional wisdom is there is no cure. Also, involve yourself with others who have similar experiences with BFS such as people here on Connect. Look on the bright side: one thing to be grateful for is the absence of nerve pain w.r.t. this condition.

I hope this issue subsides for you. I do understand that it feels like it's driving you crazy at times. Hang in there, look for ways to calm yourself and for ways to take your mind of of the twitching if you can. One thing I just thought of: many people are doing MFR (myofascial release) these days for numerous health issues. Perhaps look into that (there is a discussion about it here on Connect). And do interact with people here, they are a good and knowledgeable bunch. Best, Hank

@krfreitag I'll extend my Welcome to Mayo Clinic Connect, an online community of patients supporting patients.

You are having constant twitching and you are terrified.

I'd like to invite members that have discussed this topic, like @etana @captainanxiety8 @didi09 @jenniferhunter @lizaa @didi09 @tutina @sonsowy @richman54660 @borkoksg

I'm wondering if you have considered getting a second opinion?

@krfreitag I had spontaneous muscle twitches, but for me that was related to spinal cord compression from a bad disc. Since decompression surgery, they have stopped. A muscle will twitch if the nerve that supplies it is being compressed and that might happen because of tight muscles or fascia. The frequency of the electric signals in a nerve determine if it twitches or goes into tetany which is a sustained contraction. You may want to do some stretching to see if it helps. Take a look at our discussion on myofacial release therapy which is a way to stretch the tight tissue. You can see a PT who does this or try on your own. Yoga might help as it also stretches fascia. This needs to be done gently because aggressive stretching initiates a protective response generating more contractions.

That is a good sign twitching stops when you sleep. It may be posture related so look for a pattern of what position reproduces it. I am a Mayo surgical patient and did meet an ALS patient in the waiting area and I could see the twitching in several places in his arm. Another thing to realize is that muscle contractions have a chemistry component where charged ions are crossing the muscle cell membrane causing the contraction. In general, magnesium helps muscles relax and a lot of us are deficient in it. Soaking in an epsom salt bath for 20 minutes will allow magnesium from the salts to be absorbed through the skin. You could try supplements to see if it helps along with vitamins with minerals. Here is our link to the myofascial release discussion.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

@krfreitag I had a lot of various issues along with regions of tension, some variable twitching and sitting pain. For me, sometimes I'll start twitching somewhere if I sit too long. Sometimes not. However, I'm pretty sure some of the supplements I've listed below are helping cut nerve excitement down. I've posted many times here with the same message. Healthy fats and various supplements as well as stretching and exercise may help for things related to myofascial pain and / or neuropathy (and BFS might be a form of neuropathy with excited nerves causing twitches). Western Medical doctors don't generally know much about supplements - so they often don't mention them.

For the burning nerve pain often antidepressants are used. These same things at low dose might also calm the nerves and lower the fasiculations for you. Titrate up or down slowly on and off those (these are meant to be on for a time - not on and off from day to day). Often nortryptiline or cymbalta are used, but there are others, too. However, I was able to get off these meds in favor of the supplements mentioned, below. However, they might calm your nerves and lower the twitching if you stay on them for a while (btw Nortryptiline can actually cause twitching as a listed side effect!). Still, they might be worth a try.

While this post was originally for something else and it was long, it gives you a list of potential supplements to try. I did use those below and got off all prescription pain meds most of the time (and less tension / pain / twitches, etc.).

Short version: supplements can help relieve inflammation and nerve irritation along with stretching and exercise you can tolerate– the right ones – can also really help. There is also a "the protocol works and the protocol 525" for neuropathy. However, some of that involves insanely high levels of vitamins. I'd try what is in Fors' book and the lists I have, below, and see if those supplements help in the lowest possible doses. That is what worked for me. Last, you might want to check out Dr. Jonathan Kuttner's book "Life after pain". He discusses pain sensitization. Also, he discusses how people get stressed about these issues - but often the pain system (in your case the nerves causing twitches are activated). He has online courses and modules, too, that are affordable. You get stressed about it - but it is a malfuction of the nerves (pain system) - nothing that involves damage. However, you might be able to reverse or slow progression.

Here is a review I wrote of a book from Dr. Greg Fors. He discusses chronic myofascial pain - but even if you have neuropathy, better diet (and various supplements) and exercise might help. Sorry - this is a long post - but it is what WORKED for me:

Review of: Dr. Fors book. Why we hurt. How we heal, 2nd Edition, available on Amazon.
I've had some chronic myofascial pain in glutes and legs and I've found essentially the "cure" on my own. In the meanwhile I'd read other books such as "A headache in the pelvis". That book talks about the problem but doesn't specifically give you the cures (only some "cures"). However, Dr. Fors book is the go to book with practical tips and suggestions. His own story "case study" could practically have been my story with sitting pain and muscular tension. In his book Dr. Fors talks about oxidative stress on tissues, etc. For a person who's interested perhaps you could read it all. However, you can skip some and just go to the practical parts and use that information instead. I personally believe it is poorer circulation and poorer tissue remodeling as we age that causes these issues like myofascial tension and pain (including neuropathic pain). Apparently, I had some fibrosis / extra clotting going on as I got older (i.e. 58-ish). I believe the fibrosis in tissues / veins was causing poorer circulation and stiffness. While speculative, it may be deposits of fibrin (the blood clotting protein) that causes issues when deposited in veins, arteries and tissues and that tends to recruit cells of the immune system (granulocytes) and, hence, you also get "inflammation" (there is your low-grade autoimmunity tie in; these are my opinions; not something Dr. Fors mentioned). I believe this was true in my case. Supplements may alter and reduce this process. Read below for specific suggestions – many of which were mentioned in Dr. Fors book (I added 2 supplements to my regimen as a result of Dr. Fors' suggestions).
I do believe the supplements are the key to promote healing and proper tissue remodeling / regeneration which may go awry as we age and don't heal properly without the correct supplementation. Said differently, as you age you may need to supplement your diet with various plant substances and minerals, etc., for best health. His book is worth the price of that information alone which he details in a chapter on supplements / nutrition – but he doesn't mention adding a little hemp seed oil, etc. (I'm just writing this off the top of my head – there is a lot in this book – maybe he did mention healthy fats). As you take supplements, do check your blood pressure as these can vary it.

For me, proper supplementation (I added on a couple of Dr. Fors' suggestions, along with my stretching and exercise) have largely "cured" my tension and pain in the lower back and glutes, which included some pelvic floor tension, I believe. I have lower lumbar degenerative disc disease (which is most likely a “perpetuating factor” for myofascial pain) but all my pain comes from muscular tension and pain – which can be controlled without NSAID's and without antidepressants for me (although for a time, I did use some nortryptline for nerve pain). Honestly, if you cure your gut health (Dr. Fors has a whole chapter on that) and take the right supplements, your myofascial tension and pain (or it could be neuropathy) may go away on its own without needing to do a bunch of trigger point work (possibly; that is what happened to me – but he has a whole chapter on trigger point removal and has invented a tool you can buy separately for trigger point work – instead of using the usual balls and rollers for this). As one other reviewer said, until the root problem is cured the trigger points might simply come back – they did for me, too, at one time.

He has whole chapters about each topic. Especially, adding various supplements such as Flavinoids and flavolignins can really help you heal. Some of the supplements Dr. Fors mentioned such as ginger extract to calm digestion and Milk thistle extract (source of flavinoids) is one of many you can take (silymarin, the active ingredient in milk thistle extract, is a bunch of flavolignins, I believe; I also take diosmin / hesperidin and some quercetin (stay below total 500 mg or so daily); these are all flavinoids, I believe / resveratrol; ORAC energy greens (full of plant stuff and – you guessed it flavinoids) and extra vitamin C (staying below 2000 mg daily) and a tblsp of hemp seed oil, and turmeric. I also take rutin (vein health along with the diosmin/ hesperidin mentioned above) and turmeric daily. The only one that is really potentially toxic is quercetin. Do not take too much in supplement form and the ORAC energy greens has some in it already. People might also benefit from adding a source of SOLUBLE fiber with each meal (such as Heather's Tummy fiber) and Fors discusses gut health as super important and disorders often accompany chronic pain syndromes. He has a whole chapter on that.

The regimen I use along with stretching and exercise reversed or is cutting down on my sitting pain / neuropathic pain in the legs and glutes (i.e. less "sciatica") and reduced fibrosis in the muscles/veins, etc. I also supplemented with enzymes nattokinase / serrapeptidase and lumbrokinase, too, taken between meals to help with possible fibrin (or other amyloid type deposits) in veins / tissues. These are counter-indicated if you have clotting disorders or about 10% of people simply don't tolerate these in the gut. These have never bothered me and helped tremendously. Unfortunately, Dr. Fors did not mention those supplements that might reduce depositions of proteins in veins / tissues and are thought to be anti-inflammatory. However, these might still be considered “alternative medicine” in the west despite being used in Asia for years. Regardless, you might cure your issues with the right supplements alone, without those enzymes. I found milk thistle extract, recommended by Dr. Fors, was a good addition to the above substances as a source of flavinoids. Yes, cut down on added sugars, too, as Dr. Fors (and everyone else in the universe talks about). I had tried some of the other supplements he mentioned (like devils claw – but found it increased my blood pressure). Many others actually lowered my blood pressure!

Good luck, hope some of this helps. Rich